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MY TURN

Falling Into a Medical Abyss

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

NEWSWEEK
From the magazine issue dated Jan 21, 2008

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  • Posted By: bjwcatlover @ 02/24/2008 8:22:10 PM

    Comment: I, too, have SAA. I have said many times it would have been 'easier' to have breast cancer and cut it off! I had two rounds of ATG, first horse, then rabbit and got to enjoy over a year without transfusions. My counts were WBC 2.5 HGB 11.7 and PLT 94,000. Last month, my counts began to fall again. White was 2, hgb was 10.7 and platelets dropped to 73,000. I go again on March 4th, (IBMT in Indianapolis) and am afraid they've dropped even lower. Lots of faigue. I get very tired of people saying " you dont look sick'. Not that i want to look bad, but no one really believes that i have a life threatening illness because no one has heard of it. Keep the faith!
    Barb, in Terre Haute, IN

  • Posted By: ahgreer @ 02/21/2008 8:45:24 AM

    Comment: I wanted to let you know that you "hit the head on the nail" when you said it would have been easier to have been told you have cancer. I don't have what you have, but I do have a very rare disease called necrobiotic xanthogranuloma. I have only found 1 person that I talk with and she lives in Australia. I am a human ginny pig, but yet I have to pay for this. Seeing insurance companies don't pay for treatments that have not been FDA approved for something.
    Anyways, I just want to commend you for your article, that was so well writen.
    Living with nxg in Mississippi,
    Angela

  • Posted By: Survivor-mi50 @ 02/10/2008 1:15:06 PM

    Comment: One caveat, having had cancer, twice, it was easier that this "PPS," because of the Team approach in medicine. My oncologist, and the rest of the team members, always met with me, and we worked together on the "next step," which evidenced progress. Without J R Bach, MD, Dr. Richard L. Bruno, Post-Polio Health International, and our support groups, I'd be dead by now of "the late-effects" of Polio which I worked so hard to survive when I was 10 years old. The medical world better be prepared, because all serious viruses are causing such break downs in our immune systems. Bravo to you for opening this critically needed discussion.

  • Posted By: Survivor-mi50 @ 02/10/2008 1:08:44 PM

    Comment: My heart goes out to you. Having had Polio as a child, I've encountered a vacuum of education in the medical profession when they just won't consult with NIH, or the world experts (which I had to find!), to learn about the late effects of Polio, including horrific breathing disorders later in life. When repeated errors in care throw us into worsened conditions until we're terrified of seeking medical help, something is seriously wrong. Without support from our peers, who also seek, suffer, and find, we are doomed. You have my thoughts--stay with NIH - its the best gift to the world!

  • Posted By: bzbea316 @ 02/09/2008 2:30:42 PM

    Comment: This article was extremely interesting to me. I had sever aplastic anemia with a hemaglobin level of 3 when I entered the hospital. This July will be my 29th anniversary of having a successful bone marrow transplant performed at UCLA! I was one of the most fortunate, because I was blessed with an identical twin sister, who was able to provide me with her life-saving bone marrow. I was 25 years old at the time. Since the transplant, I have been able to live a healthy life and raised 4 boys. Miracles do happen! Best of luck to you, Joe. Keep thinking positive!
    Bea Iamurri - bzbea316@aol.com

  • Posted By: jpearce @ 02/07/2008 8:44:26 PM

    Comment: Hey its Jeremy Again. I did however go to the National Institute of Health in Maryland as well. Last year was my first trip. It wasn't too long after my last ATG treatment in 2006. I felt good enough to take a tour of washington D.C. which was a must. It is very important (like the comment below from jhkennedy) to visit the NIH institute if you have Aplastic Anemia or any similar diseases. That is where the specialist are for these rare blood illnesses. I saw Dr. Neil Young...Not the Folk rocker..hehe, but a pioneer in the AA world. He was extremely helpful and informative of my most recent mishap with PNH. And yes, from what I have read you can receive financial assistance from the aplastice anemia foundation to help with any costs for your initial trip. You may go back but I didn't. I took one trip for a day there for them to get all of my labs and info. If you are a good candidate for any of their treatments available, they will recommend one of the treatment options. Most likely you may be taking a few trips out there for the any intensive treatments. On top of everything, they treat you very well, are kind and understanding. If you are new to AA, PNH, or MDS, definately should consider this trip in the near future. Thanks.
    Jeremy Pearce

    • Posted By: douglasp @ 02/09/2008 09:20:00

      Comment: Hey Jeremy, It's your pop. This is a great article and a great venue for you to help others that are going thru the same anxiety that you endured in the "early days". As you know, positive attitudes and blessings are at least 50% of what pulls you thru.

      Love always !

  • Posted By: Ikey @ 01/29/2008 10:02:16 PM

    Comment: In August of 2007 our 17 y/o son was diagnosed with Very Severe Aplastic Anemia. His siblings were not matched bone marrow doners and we were skeptical of immunosuppressive therapy because the potential for PNH, MDS, leukemia and/or relapse seemed inevitable. We read research on High Dose Cyclophosphamide Therapy pioneered at Johns Hopkins Hospital in an article by Robert Brodsky. (http://www.annals.org/cgi/content/abstract/135/7/477) It gave us hope. Through a series of hoops and miracles we were able to spend 7 weeks in Baltimore for treatment and follow-up. The High-Cy basically destroys the immune system (it is also used to condition a patient prior to a bone marrow transplant) and then the body basically "reboots" the blood making factory in the bone marrow. The response rate is about 70%. It has a potentially lengthy recovery time during which the patient is prone to infection. Often it takes 1-3 years to recover counts; my son had a quick recovery - within 35 days he had recovered an ANC of 500+ and had no more transfusions of
    blood products. We have tasted the bitterness of Aplastic Anemia. We have walked the trail, although, praise the Lord, it was briefly. We dared to try an innovative treatment (four hematologists discouraged us from pursing it) and the Lord has blessed. It's not for everyone, but this treatment deserves consideration.

    • Posted By: aquarius40 @ 01/30/2008 23:17:30

      Comment: Thank you for providing information on Cytoxan. I did the treatment at Johns Hopkins in late 1999 and I have had normal counts for years. It irks me that the AAMDS continues to discourage the sharing of information on this treatment. I am glad your son is doing well. I know of many people personally who share his success with Cytoxan, myself included!

  • Posted By: jpearce @ 01/26/2008 8:15:56 PM

    Comment: I would like to add that I was diagnosed with avascular necrosis in 2002. I was living in a world of pain and decided to go through with bi-lateral hip replacements. After rehabilitating my hips all has been well, and I'm living a good quality life. The orthopaedic doctors have found evidence of it in my knees. Not that it spreads, but that my knees were affected by the cause just as much as my hip joints. The cause is unknown, but 2 possibilities are reactions from 2 particular drugs that were prednisone and cyclosporine(steriods, immunosuppressant) Excellent Article Mr. Schreiber. I am excited to meet some new folks who I'll have a lot in common with...finally! Also the aplastic anemia foundation is an incredible resource and I've tried to stay involved ever since my diagnosis of severe aplastic anemia in 2000. Thanks and looking forward to talking with all of you!

    Jeremy D Pearce

  • Posted By: jpearce @ 01/26/2008 7:52:05 PM

    Comment: My name is Jeremy Pearce and I am 26 years old. I have lived with aplastic anemia for 8 years. I have been diagnosed with other illnesses such as MDS and PNH which are associated with AA. I have a lot to share with others who have been through all this , especially at a younger age. Its been one heck of a rollercoaster. Please do not hesitate to send me an email for any questions or comments...(jeremypkc@yahoo.com) Thanks!

  • Posted By: jackiejo_nederlanden @ 01/26/2008 6:06:46 PM

    Comment: Hello Mr. Schreiber, and thanks so much for the article. Almost two weeks ago I had my bone marrow sample taken, and last Monday I was told the doctors were unsure whether I had Aplastic Anemia or a chemical insult on my bone marrow. They started me on prednisone (which has, in this past week, rendered me unable to concentrate on my classes or attend work as usual), which I'm hoping will help things. I will be on it for a month as a diagnostic test, and I'm desperately hoping that it helps. I turn nineteen in less than a week, and am attending a small university in rural Texas, far away from any clinics that may be able to help if it turns out to be AA. I know little about the disease, but I'm very thankful for the comments and links placed by others. It's good to know there ARE others out there that have been through this.

    Thanks again,
    jacklyn.

    • Posted By: jhkennedy @ 02/02/2008 03:03:05

      Comment: Hey, I'm currently 19 as well, and was diagnosed with severe aplastic anemia last june, if it turns out you do have AA i would highly recommend going to the National Institutes Of Health in Bethesda, Maryland. It's where I went for treatment in September and now my counts are way up and I'm back in school. If you go you would become a part of a study so they pay for EVERYTHING, airfare, all your meds, treatment, and they follow your health for the rest of your life. Dr. Young and Dr.Scheinberg are the two big shots in the AA world and they would be your doctors, heres Dr. Scheinbergs email address, scheinbp.nhlbi.nih.gov, he can answer your questions or set up an appointment for you.
      Hope this helps, Joe
      feel free to email me if you have any questions jhkennedy1@bama.ua.edu

    • Posted By: jhkennedy @ 02/02/2008 03:01:09

      Comment: Hey, I'm currently 19 as well, and was diagnosed with severe aplastic anemia last june, if it turns out you do have AA i would highly recommend going to the National Institutes Of Health in Bethesda, Maryland. It's where I went for treatment in September and now my counts are way up and I'm back in school. If you go you would become a part of a study so they pay for EVERYTHING, airfare, all your meds, treatment, and they follow your health for the rest of your life. Dr. Young and Dr.Scheinberg are the two big shots in the AA world and they would be your doctors, heres Dr. Scheinbergs email address, scheinbp.nhlbi.nih.gov, he can answer your questions or set up an appointment for you.
      Hope this helps, Joe
      feel free to email me if you have any questions jhkennedy1@bama.ua.edu

  • Posted By: bmarcus955 @ 01/25/2008 4:38:45 PM

    Comment: As the patient educator for the Aplastic Anemia and MDS International Foundation (www.aamds.org), I understand how important it is for people affected by aplastic anemia and other rare bone marrow failure diseases like myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemogloburnia (PNH) to get support from other patients and caregivers who know what they are going through. Our global support network of volunteers http://www.aplastic.org/aplastic/information__hope/global_volunteer_net/ was created specifically to fill that need. Anyone???patients and caregivers???who would like support from one of the volunteers in our global support network can call 800-747-2820 or 410-867-0242 or email clark@aamds.org. I can match you with someone who can help you deal with your treatment experiences, the physical and lifestyle challenges, and the emotional aspects of having a rare disorder.

    The AA and MDSIF also provides free educational materials, publishes a free newsletter and eBulletins, funds research around the country, advocates for patients on Capitol Hill and with government agencies, and hosts an annual patient and family conference where patients can learn the latest in research advances and treatment options as well as connect with others. (The 2008 conference will be held outside Washington, DC July 27-29 with an Advocacy Day on Capitol Hill on July 30; more information will be in our eBulletins and on our website.) We welcome your questions, thoughts, and ideas: the Foundation is here to give you answers, support, and hope.

    Leigh Clark

  • Posted By: JillM @ 01/25/2008 4:26:23 PM

    Comment: It's amazing to read about so many people going through the same thing that I am. Sometimes I feel Iike I'm probably the only person in my whole city with aplastic anemia. I am 25 years old and was just diagnosed in September 2007. I went to the doctor for nose bleeds and then my whole life crashed around me in the weeks to follow. At least that's how it felt then. Reading medical information about AA is not comforting, but reading other people's experiences certainly is. There is always hope. I underwent ATG treatment and am now in my 4th month on cyclosporine. My counts are just now starting to show improvement and I can only pray that they continue to do so. Otherwise, I am luckly enough to have 2 matches in the bone marrow registry for possible transplant. No matter how hard the people around you try to understand they just can't. It's wonderful to find others going through the same thing and I wish everyone the best.
    Jill

  • Posted By: petebosox @ 01/24/2008 1:59:54 PM

    Comment: Hello Mark and all Aplastics
    I enjoyed the article.
    I was diagnosed approximately 15 years ago at the Cleveland Clinic and since that time in the old S and T building, knocked down for newer buildings, I have called " The Clinic " my doctor. I attended a few national conferences at the beginning and talked to many other people with the same condition. It is difficult being a nonperson in Orwellian terms, but there are resources available along with hope. I was not going to write anything in response to your article at first, because of the pressure put on by so called professionals in this field. I travel like you, but not as far, 30-40 miles away from the Clinic. I also traveled at first to many other places across the country searching for answers. I wish you luck and hope along with all other aplastics whether acquired or idopathic and especially the children. I am 50 now and maybe one day I'll attend again a national conference. If you happen to come up this way to the " Clinic " look for the Yeti, since even Dr. M can't believe I still travel around ( keep a sense of humor because it is as bad as they say ).
    Thank you again for putting something in a national publication and maybe people will realise stem cell research will help so many with diaganosed conditions of cancer, leukemia, myodysplasia, aplastic anemia, and so and so on.

  • Posted By: petebosox @ 01/24/2008 1:53:42 PM

    Comment: Hello Mark and all Aplastics
    I enjoyed the article.
    I was diagnosed approximately 15 years ago at the Cleveland Clinic and since that time in the old S and T building, knocked down for newer buildings, I have called " The Clinic " my doctor. I attended a few national conferences at the beginning and talked to many other people with the same condition. It is difficult being a nonperson in Orwellian terms, but there are resources available along with hope. I was not going to write anything in response to your article at first, because of the pressure put on by so called professionals in this field. I travel like you, but not as far, 30-40 miles away from the Clinic. I also traveled at first to many other places across the country searching for answers. I wish you luck and hope along with all other aplastics whether acquired or idopathic and especially the children. I am 50 now and maybe one day I'll attend again a national conference. If you happen to come up this way to the " Clinic " look for the Yeti, since even Dr. M can't believe I still travel around ( keep a sense of humor because it is as bad as they say ).
    Thank you again for putting something in a national publication and maybe people will realise stem cell research will help so many with diaganosed conditions of cancer, leukemia, myodysplasia, aplastic anemia, and so and so on.

  • Posted By: Dorirod @ 01/24/2008 8:15:53 AM

    Comment: I know EXACTLY what you are talking about! My 16 year old son has a rare auto-immune disease that they don't know much about. Also using immunosupressives and prednisone, wandering aimlessly in the medical research world are his doctors. They also are willing to see him immediately and are fascinated by his disease like he's a freak show. We hate it. Incidentally, we are traveling to the Cleveland Clinic on Feb. 7th from Homestead, Fl. for a second opinion. He has also said that he wishes he'd had something more common like Cancer. Thanks for your article.

    • Posted By: aquarius40 @ 01/30/2008 23:12:35

      Comment: Dorirod, I hope you will consider looking into other options besides ATG if your son is not a candidate for bone marrow transplant. Cytoxan is the treatment the Aplastic Anemia Association doesn't want anyone to know about. Why? Because it works better than ATG - no relapse! When people are cured, they don't need the AAMDS organization anymore.

  • Posted By: bmarcus955 @ 01/23/2008 12:20:23 PM

    Comment: You can contact www.aamds.org for more information

  • Posted By: mark schreiber @ 01/23/2008 2:31:11 AM

    Comment: While I can't respond to everyone individually here, I appreciate your comments and your sharing your own stories. If anyone wants to reach me directly my e-mail is msch912@aol.com. Thanks again for reading the essay.
    -Mark Schreiber

  • Posted By: aquarius40 @ 01/22/2008 6:52:04 PM

    Comment: There are lots of aplastic anemia survivors out there, although I agree that it can be hard to connect to them. I was personally diagnosed back in 1999 and have a normal, active life today. This is thanks to the treatment I received at the Johns Hopkins Hospital in Baltimore, MD. I was not a candidate for bone marrow transplant, nor did I want to do the standard ATG treatment since it often results in relapses. FortunateIy, I was referred to Dr. Robert Brodsky, the Director of Hematology, who has done a significant amount of research on aplastic anemia and developed the protocol for the use of Cytoxan to cure this disease. While the cure was not always easy, it has been permanent. I have been transfusion free for 5+ years and have normal blood counts. The treatment works best if you haven't had other immunosuppressive therapies, but I did Cyclosporine first which didn't work. I am physically activeon a regular basis and work a full time in a challenging field. I got my life back and now I have the wisdom to enjoy it. Hope you can do the same.

  • Posted By: Merle1 @ 01/22/2008 4:55:43 PM

    Comment: Hi Mark:
    I myself have the same diseasem mine is known as "sideroplastic anemia. Now that I'm in my mid 60's I am too old for a transplant. However I do know that the states have a new deal out now that is suppose to remove the iron from your bone marrow to produce your red blood cells. However in Canada it has not yet
    been approved, so now I'm on every four week blood transfusion to keep my blood up to par. Are you undergoing blood transfusion as well? I know my odds today are unforseen, the hemotolist can't define, due to I guess not doing enough research on this matter. I have basicically always been told I'm anemic, but since 1995, my red blood cells has done a slide. Thank you for your comments that you edited.

  • Posted By: kams @ 01/22/2008 4:08:40 PM

    Comment: I appreciate you writing your story. My 21year old son was just diagnosed December 19, 2007. Needless to say life has changed for him and for his immediate family. He's frustrated that he cannot return to his job (he loved his job, his co-workers and his employer) I have been taking him to his appointments that usually last 3-7 hours not including the hour drive to Boston and the hour back home. And trying to juggle my full time job and trying to keep things as normal as possible. We're middle class people paying his monthly health insurance premium while he is on "medical leave" and supporting him financially. We have helped him apply for food stamps and possibly some short term cash ( we just found out that his 2002 VW that he still owes over $5000 will probably disqualify him for any cash help). I won't elaborate any more on the money part of this except to say there really isn't a lot of financial help and understanding for AA. I am still grateful that we have the insurance because it will eliminate a lot of extra "red tape" for the donor's costs (if a bone marrow transplant is needed) would not be covered by our state welfare system. We would rather have peace of mind than one more thing to have to deal with at this point in time. :)
    He is currently being treated at Dana Farber Cancer Clinic. The people there are very nice and compassionate. I know what you're saying when you write about being in a cancer clinic and not having cancer. It's weird. He's getting platelet and red blood transfusions for now. Sometimes he sits with his Uncle who is being treated for lukemia! Last week they both had platelet transfusions sitting next to each other. What a way to meet up with family!
    If there is no progress , as in blood counts improving within a couple more months, he has been advised that he will need a bone marrow transplant. Fortunately, we are all positive minded and believe that it will work out..
    I also am very thankful to the people who donate their bone marrow. The doctor explained the process to us today and I am amazed to hear that the donor has approx. 100 holes punctured in their hips to extract the marrow.
    I have stopped telling people that my son is sick unless I absolutely have to for the same reasons you mentioned in your article. People just don't know what aplastic anemia is. Hopefully, your story will get a lot of exposure and more awareness to this disease.

    • Posted By: caregiver1 @ 01/23/2008 00:43:10

      Comment: My heart goes out to you and your son. I can't help but shed some tears remembering those first weeks. My then 34 yo husband was diagnosed with Severe AA on Sept 1, 2004, had IST with ATG on Sept 17, contracted aspergillus fugal pneumonia (70-90% mortality in immunosuppresed pt's), described as ineligible for BMT by hem/onc, then BMT docs stepped in a he had his BMT on Nov 31, 2004. The emotional toll as caregiver can be incredible so remember to take care of yourself too. Don't turn down any and all help. It's hard, humbling and sometimes even humiliating, but do it. Even if you don't think you'll need it, take it. I always felt so humiliated when people gave us $50 here or $100 there. I did though and never regretted it and always ended up needing it. The long drives alone with gas prices like they are can burn up a lot of money. We too had to drive an hour in and back to Salt Lake City for his transfusions and treatments. In the 100 days post BMT we had to stay in an apartment closer to the city as the doctors said our drive was too far away in case of infection. Talk to your and his tax advisor so that you keep track of expenses that may be written off later. It really helped us. Sometimes hospitals have charitable foundations that can help with some of these expenses. Check with the AAMDS, they sometimes have grants available to assist as well. This can seem so overwhelming and impossible at times. Don't ever, ever give up hope. My husband is our living proof, 3 years later, that miracles against very bad odds can happen. He still goes to clinic 1-2 times per week for management of Graft vs Host Disease, but really is doing fairly well. The best part is, he is alive to help me raise our seven year old and 4 year old twin boys. Life is good. Please, please if I can be of any help to you even just as an understanding and non-judgemental sounding board, please e-mail me at handkgeorge2@msn.com or visit our blog at saasurvivor.blogspot.com. My best to you, Heather

  • Posted By: skilovr @ 01/22/2008 1:13:00 PM

    Comment: Thank you for this story. Last fall, my 3YO son was diagnosed with severe aplastic anemia. Like you, the doctors originally thought he had leukemia, and we had an unthinking resident mention that he could have aplastic anemia, but that it was very rare and had a much lower survival rate, and then went on to tell us how well children with leukemia do these days. Imagine my feelings when he was finally diagnosed. When people found out my son was sick, I was often told "at least it isn't cancer." We have actually been very lucky. Immunosuppresive therapy has resulted in blood counts that are high enough for him to resume normal activities (he even started preschool two weeks ago) and he has had wonderful doctors, but having a child with such a rare disease means not having other parents to talk to going through the same things. We lived our lives terrified that we would lose our son and many of the people we knew still thought he just needed iron tablets. Luckily, when you are three, you just think that all kids suddenly start getting lots of blood tests, transfusions, medication, get to spend time in the hospital (he actually loves it there; we have a fantastic pediatric hem/onc clinic), and get very, very hairy (he misses his "fur" that he had while on the medications), so for him, it has been one big adventure. The only thing that he had real trouble with was the isolation as we couldn't socialize with other children for fear of being exposed to something he couldn't fight off. I wish I could say it was as easy for us as his parents. The fear of the smallest fall, the littest bruise, a single cough, still makes my heart stop. I can only imagine how hard it must be to deal with this as an adult and my heart goes out to all of you dealing with it.

    Dorothy

  • Posted By: Alex Koshy @ 01/22/2008 5:41:56 AM

    Comment: I apologize for the incoherent comments posted by me....i have a ENTER key which gets stuck sometimes....
    continued from the previous post......
    cGVHD has been a part of my life since 2005.I think it has been the hardest to deal with.This article i hope will certainly increase awareness and hopefully one-day(hope in my life-time) be able to understand AA completely.

  • Posted By: Alex Koshy @ 01/22/2008 5:33:56 AM

    Comment: Hi Mark,
    Great story!
    I was diagnosed with aplastic anemia in Nov.2004 and underwent an allogenic BMT in Dec.2004.I have been doing more or less OK except that i have developed chronic Graft-Versus-Host-Disease.cGVHD has been a paapart of my li

    c

  • Posted By: Alex Koshy @ 01/22/2008 5:18:12 AM

    Comment: bjhbkjh

  • Posted By: 4altman @ 01/21/2008 1:47:00 PM

    Comment: Great story Mark -
    My husband, also a Mark, was diagnosed with SAA 16 months ago, after 9 months of an unexplained low platelet count. At first we felt relieved to actually have a diagnosis -- it seemed better than "for some reason your body is fighting against itself but we don't know why" - and poured over every article and website we could find. We hadn't realized how rare this disease is and how limited the treatments were. After an unsuccessful ATG treatment, the only option left was a BMT. Thankfully, a match was found with one of his siblings. My husband, at 51, wasn't the perfect candidate for BMT, but it was his best option. During the BMT and the ATG, what was frustrating was the number of hospital staff that asked "and what type of cancer do you have" before they even looked at the charts. I'm happy to say, that 7 months post-transplant, almost all of the drugs have been stopped. He had no GVH, his whte and red cells are within normal ranges and the platelets are at least higher than were they'd been pre BMT and there have been NO transfusions since his release. Even better, after 13 months of disability, he is starting back to work! If anyone is in suffering from SAA in the Midwest, Dr Devetten and the University of Nebraska Medical Center were incredible. Dr Devetten's knowledge about the disease and the treatment options available allowed us to understand it and the treatment options available. If there are bone marrow drives in your community, encourage everyone you know to participate! Blood donors - consider platelet donations. We went through more platelet transfusions in 18 months than I can count! Thank you for the article and raising the awareness of this disease. My thoughts and prayers are with all of you, and your families, that are currently suffering from Aplastic Anemia.

  • Posted By: heathervega @ 01/21/2008 12:31:17 PM

    Comment: Mark-
    So nice to read your article. Just briefly wanted to tell you- things WILL get better. I think that was something I needed to hear when I was diagnosed over 3 years ago and things were looking so grim. Over the years I've learned how precious life is, and try to remember each day how lucky I am to still be here. Since being in "remission" I've had two children and went back to my job as a doctor after being hospitalized for a week on the ATG, steroids, and cyclosporine. It was a very slow process, but my blood counts are finally back to normal. Sometimes I think of that as a blessing, it truly put things into perspective. May you continue to do well, my prayers are with you.

    • Posted By: mark schreiber @ 01/23/2008 02:27:43

      Comment: I want to thank everyone for reading my essay. I appreciate your comments and support. While it is distressing to read what patients have endured, I can say that I'm proud to be part of the aplastic anemia community, because those of you whom I've met or whose posts I';ve read here or on the forums, have dealt so courageously with this disease and have overcome great obstacles in surviving it.

  • Posted By: abono @ 01/20/2008 6:04:28 PM

    Comment: I was diagnosed with with aplastic pancytopenia at age 16 in July, 1986. My watch bruised me wrist to elbow, and my gums bled. My platelets were below detection limits (2K) and no one knew why. I was lucky - I have great parents, my dad sells insurance, and we lived in Boston, the best place in the world to get sick. I received awesome nursing care at MGH and was treated by nationally recognized doctors (Truman and Kreschmar). They taught me everything they knew my condition.

    In 1986, it wasn't much. AA was virtually unknown. They checked for cancer and inheritable diseases. They did bone-marrow biopsies. Finally a pathologist at Dana Farber discovered that not only did my samples consume my own cells, they were ravenous for others: my T-cells were on a rampage, looking for stem, red, leukocytes, or platelets. And they were very efficient.

    Bone-marrow transplantation was new, we had no matches, and every platelet transfusion accelerated my immune response (from 140K to 4K in 12 hours). Instead, I was the 12th AA patient to receive anti-thymocyte globulin (ATG). I'm not sure about today, but ATG itself had a 50% mortality rate (better than the 100% with AA). After calls to 3 continents, they found the last available batch of ATG in the world at that time stashed in the back of a fridge in a university lab in Minnesota. I survived the horror of severe cytokine release: 10 days of intense pain and 104?? fevers. I survived blood infections from my portacath with my immune system shut down. But, on Columbus Day 1986, I was sent home to my family. On hands and knees I dragged my butt upstairs, into bed, and I stayed there for days, just sleeping. And I lived.

    My counts climbed. I was back to school by Christmas. I completed a full year in 5 months, graduated in June 1987 on time, and left Sept 1987 for university.

    The experience permanently healed old wounds between me and my parents, taught me to see things I never would have, gave me a confidence that can never be shaken, and cemented friendships that survive today (thanks, Jeff for this article). I wouldn't trade that experience for anything. Today I intimidate the hell out of my family doc (I don't have a specialist ). I have a little optic nerve damage. My platelets hover between 90-120K, and I'm slightly anemic and slightly low on WBC's. But I don't feel any of it. I live a normal life. I practice martial arts, and my friends will tell you I ski black diamond mogul trails quite badly -- without bruising from head to toe.

    And every Columbus Day, when warm days have come to an end, and the green bleeds from the veins of the leaves... while the natural world is going through a cycle of death, my family gathers together and gives thanks - truly stops and gives thanks - that we're all still here, on what feels like our own secret holiday.

    Mark, and everyone else who posts here: good luck, my thoughts are with you.

  • Posted By: mindscanner @ 01/20/2008 2:55:40 PM

    Comment: My wife was diagnosed with Aplastic Anemia in October 2006 and has been fighting a lonely battle ever since. It was with tremendous joy that she discovered Mark's wonderfully written article, and subsequent reader comments which were posted on the Newsweek website. Her comment to me was, "I feel like I have friends now that understand. I don't feel so alone". I suggested a blog so that people in the Aplastic community could stay connected. A place to post individual stories, experiences, a place of hope. Let's keep the communication going. Let the healing begin. Please feel free to go to http://theaplasticblog.blogspot.com/

  • Posted By: isabela @ 01/19/2008 6:49:20 PM

    Comment: Dear Mark, it was really nice to get to know you and read your article. I'm a chilean English teacher and my 21-one-years old nephew is ging thru the same disease as you. Unfortunately, he hasn't gone up his levels of white and red cells and platelets levels. In chile, I started to find out who was suffering this rare desease and i've come to know around 10 patients, besides the 26 patients of an hematologist who works in Santiago. My nephew and I live in La Serena, in the North of Chile. I'm always in touch with the other members to help one another in one way or another. Of course, the main problem is money, since the pubic hospitals don't have a framework good enough to treat these kinds of patients. Medicines are really expensive. My nephew's doctor thinks he got the AA in a grape packing place. Most of the chilean grapes go to the east zone of U.S and Rotterdam, Setuval (Portugal), Los Angeles U.S.. maybe ther's a relationship between my net members and the agricultural zones. Most of them come from the North of Chile and especially from exportation grape or other fruit zones. Do you think there's a coincidence, 'cause, in the vineyards many chemicals and pesticides ares used and the authorities don't check what they are using to make the grapes grow the best from the very beginning. My dear Mark, when reading your article and seeing that we're not the only ones, made me feel so hopeful. I'd really get in touch with you and all the people having this desease to help to relieve the pain and sorrow in my chilean aplastic net. Remember that Marie Curie and Eleonor Roosevelt died from this. The Chilean public health is really precariuos and most of the members of my net can't afford private clinic medical attention. IN fact, only 2 out of 12 are in private clinics, but they're in great money debt. Please, Mark, answer me and all the AA patients who want, this is a way to support one another, no matter the distance. You can't imagine how mothers and families of my cyber AA friends suffer .... Let's make a big chain of support and help, if God's will. My e-mail is isabela_cl@yahoo.com. Mark, I read your article and the other people's comments. We're in dispair, please just send me a mail to relieve our chilean net and believe thaqt we're not the only ones and believe that we're not orphans, but we doctors who can make us feel we have a home. My nephew was about to die in 4 times due to the unexperience of his doctor.But we can't afford a private clinic with better professionals. Please wrie to me, all the people who's suffering this rare disease. My love for you Mark, Isabel from La Serena, Chile.

    • Posted By: caregiver1 @ 01/20/2008 19:22:37

      Comment: Dear Isebela, I am so sorry for your nephew. I have heard that sometimes long term exposure to pestidices and fertilizers can cause AA. I read about a man who worked in a fertilizer plant for 20+ years here in the U.S. and developed AA. My husband was diagnosed with Severe AA in September of 2004, almost exactly one year after he started working at a chemical incinerator plant. We never had a clear cause and effect but his doctors think this may have been the cause. I wish I had more answers for you. I hope you can find the answers you are looking for and hope your nephew gets the treatment he needs. God Bless, Heather

      • Posted By: isabela @ 01/21/2008 22:06:43

        Comment: HEATHER, WOULD IT BE POSSIBLE TO KEEP IN TOUCH WITH ME. MY MAIL IS isabela_cl@yahoo.com.
        And above there's a reply where someone suggests a blog http://theaplasticblogspot.com/
        We could also start by communicating via that blog, all of us, as that person says "let the healing begin". I really hope to hear from you. Thanks a lot for your reply. God bless you, Isabel

  • Posted By: isabela @ 01/19/2008 6:23:33 PM

    Comment: MY DEAR MARK. I'D REALLY LONG FOR KNOWING MORE ABOUT YOU, SINCE I'VE TRIED TO JOIN THE MOST PEOPLE SUFFERING SEVERE APLASTIC ANEMIA IN MY COUNTRY - CHILE-. UNFORTUNATELY MY 21-YEARS-OLD- NEPHEW IS GOING THRU THIS TERRIBLE DISEASE, THAT'S WHY I STARTED TO LOOK FOR PEOPLE LIKE YOU BOTH AND HOPING MY NET GOES ON BEING IN TOUCH AS IT'S BEEN SO FAR. MY NAME IS ISABEL PERALTA AND I'M REALLY TRYING TO KEEP MY GOALS GOING ON. PLS, WRITE A MAIL TO ME. IT'LL HELP ME A LOT, IT'LL RELIEVE SADNESS, AND AT THE SAME TIME I COULD HELP MY FRIENDS SUFFERING THE SAME AS YOU (THOUGH I DON'T KNOW THEM PERSONALLY). MY NEPHEW IS ONLY 21 AND HE'S BEEN SUFFERING THIS APALSTICA ANEMIA FOR 2 YEARS SO FAR. HIS LEVELS OF WHITE AND RED CELLS HAVEN'T GONE UP TOO MUCH AFTER THE PROTOCOLAR TREATMENT. AND THE CURIOUS THING IS THAT, MOST OF THE MEBERS OF MY NET IN CHILE, HAVE ACQUIERED THIS AILMENT IN THE NORTH OF THE COUNTRY, ESPECIALLY IN AGRICULTURAL ZONES. ARE YOU, THE NORTHAMERICANS EATING TOO MANY CHILEAN GRAPES, BY ANY CHANCE? I'M REALLY INTERESTED TO WRITE TO A U.S. MASS MEDIA TO TELL THEM THAT THE CHILEAN GRAPES MAY NOT COMPLY WITH THE NECESSARY CHEMICALS OR PESTICIDES, SINCE THE VERY MOMENT THE PLAT START TO GROW. IN FACT, ACCORDING TO THE DOCTOR, MY DEAR NEPHEW GOT THE DESEASE IN PACKING OF GRAPES. PLEASE, ANSWER ME. YOU WOULD MAKE MY DEAREST NEPHEW AND MYSELF REALLY HAPPY TO KNOW ABOUT YOUR EXPERIENCE. ALSO TELL ME HOEW I CAN GET MY NEPHEW GET HIS TURN IN THE MAGAZINE. MY E-MAIL IS isabela_cl@yahoo.com. I'M AN ENGLISH TEACHER, I'VE BEEN IN TOUCH WITH LEE CLARK MORE THAN ONCE. DO YOU KNOW HOW TO GET TO BILL GATES, THERE'RE SOME PATIENTS HERE WHO DON'T HAVE ENOUGH MONEY, SO THEY CAN'T AFFORD THE RIGHT TREATMENT. SOME HOSPITALS IN CHILE DON'T EVEN HAVE THE MOST BASIC FRAMEWORK TO TREAT THESE PATIENTS. PLS, DON'T FORGET MY NAME AND ANSWER ME. GOD BLESS YOU YOU, MY NEPHEW AND THE MEMBERS OF MY NET WILL GET OVER ALL THIS. ANSWER ME. THANKS A LOT. ISABEL. OF COURSE THE ARTICLE WAS EXCELLENT, MAYBE WE COULD DO SOMETHING TOGETHER. THEN. I'LL GIVE YOU MY FOTOLOG ADDRESS TO KNOW MY NEPHEW, MY FAMILY AND MYSELF. MANY OF US ARE IN DISPAIR, BECAUSE OF THE BAD TREATMENT, OR SIMPLY BECAUSE OF YOUNG CHILDREN SUFFERING SAA. (AROUND 26). KISSES AND A BIG HUG FOR YOU THRU THE DISTANCE. ISABEL

  • Posted By: Dave_P @ 01/18/2008 6:29:27 PM

    Comment: Hello Mark,
    I loved reading your article. Several of the things you touch upon are familiar. You talk of how you wished to meet people just like yourself, about how people's eyes gloss over when you try to explain AA. I can understand you're feelings on all of those. Shortly after turning 14 in March of 1978 I started getting the infections, bruises and fainting spells. My mother who was a nurse noticed the petechia all over my legs even though I thought I was fine. She forced me to the Bethesda Navy Hospital in Maryland and on May 25, 1978, while I felt this was silly, and I was still mad at having the bone marrow biopsy, I heard the doctor tell her "Well its not leukemia! but its just as bad". At that moment my life changed forever. Within a week my platelets had dropped from 16k to 4 k and I found myself on a Navy medical flight to Seattle to enter the Fred Hutchinson Cancer Research Center for a BMT from my older brother. I was their 129'th transplant patient for AA and watched as other AA and leukemia patients went through their treatments. I did well. Many did not. When I returned back to semi-normal life a year later it was difficult to explain ANY of it not to mention "what is aplactic anemia?" To this day people loose interest and I struggle to decide if I just want to say "YES ,I had cancer. Yes ,I lost all my hair. Yes. I have someone else's blood traveling through my veins, YES, I returned to high school forever different from everyone else". I can say all the above except the cancer part and I'm fine with that but I can really understand how AA patients can feel alone and wonder about who is looking out for their interests. I recently participated in a few events with the luekemia and lymphoma society to raise funds through their Team in Training program which was a wonderful experience, but even there my team mates had no idea about what AA was. I was pleased to shed a light on whomever would listen. At a pre-race dinner for one of the events, the speaker talking to the huge crowd of fund raisers asked for all the cancer survivors to stand up to show how many were taking part in the race. I was torn about standing and my mother-in-law motioned for me to stand but still I felt different even 30 years after my BMT. I was very happy to see your article about aplastic anemia and I hope it continues to help keep a focus on advances in treatment options. There have been many over the years and It amazes me today to see what is being done. However there is very much more. Getting people to sign up with the NMDP, www.marrow.org, is something anyone can do. I work in a small company but we did get 8 new people on the registry last year. This is a way that anyone can make a contribution. I had a matched sibling 30 years ago and was very very lucky. There was no NMDP back then. Today anyone can easily help out.
    Mark, I hope to see a follow up article on how you are doing. We are a small club.

    • Posted By: isabela @ 01/19/2008 19:13:46

      Comment: My name is Isabel Peralta and I've ctreated a net of AA patients, after knowing that my dearest 21-years-old nephew was suffering from AA like you. He's been with this desease for 2 years so far, and most of the members of my chilean net. My nephew can't get a marrow transplant for being an only child: besides, in Chile medical framework is not as good as in your country. My nephew's name is Fabi??n. He has 20.1 of red cells. 2000 of white and 14.000 platelets. he can't do anything he used to do before -handball, athletism, swimming, etc- he was always so energetic that he got a lot of medals for long jump in athletism since he was a child. Could you answer me. It's important to me to know how you get your disease. You live in the Coast of U. S.. Do you eat too many chilean grapes? Most of the members of my chilean net have acquired the diseasee in the North of Chile. Look at a Chilean map: Copiapo City, Arica City, Elqui Valley, Limari Valley. These are the main zones of exportation grapes. Do you think there's a relation between AA and pesticides and Chemicals used in the very beginning grwth of the grapes and other fruit. I can tell you that, just a vessel left the port of Coquimbo (North of Chile) to Delaware taking around 5.000 pallets and containers with chilean grapes to supply the East U.S. markets. Please get in touch with me. isabela_cl@yahoo.com

  • Posted By: suebtender @ 01/18/2008 3:18:58 PM

    Comment: Hello Mark,
    My 22 year old daughter was diagnosed with AA while she was pregnant . My granddaughter was brought into the world two months early because of the risks my daughter faced in carrying her to term. The baby is fine thank goodness, but we are now going through immune supressent treatments. It is really scary to decide on treatment options, she does not have a matched sibling donor and we haven't had any luck finding a nonrelated donor. She would like to have a BMT as she feels this is her best option. Also, having two small children adds to her distress as she always worries about how she can care for them if she has a BMT. We, her family, are doing every thing we can to support her and help her with the kids, but she still worries. I'm glad that you wrote this article,. I will keep it with me to help explain to people what we are going through. When ever someone asks me what they can do to help, I ask them to go to the local blood bank and donate, also to sign up to be a bone marrow donor. Good luck with your treatment, I hope you are healed soon.

  • Posted By: mgalbraith @ 01/18/2008 12:49:55 PM

    Comment: MGalbraith@1/18/10:53

    I was very happy to see an article about Aplastic Anemia and it effects on the patients who have it or had it! My son was 7 yrs old and dx with SAA, we had no clue what it was and it was very hard to talk to the people at the oncology clinic where my son started treatment because they were dealing with something completely different! We were blessed that my son had a BMT after 6 months of being dx, the immunosupressed therphy was not working after two attempts he continued to decline rapidly..we were at lost! But thank god to the person who had donated her umblic cord to BM registry our son would not be here today! It has been almost 5 years post transplant and our son is healthy and looks great! Whatever may come later we will deal with it than. Thank you!!! for the article hopefully this will reach more people out there and to explain to them what people with AA deal with everyday.

  • Posted By: Alex Koshy @ 01/18/2008 7:23:05 AM

    Comment: ujhkjh

  • Posted By: RuthLA @ 01/18/2008 1:05:46 AM

    Comment: Hi Mark. I too felt like an orphan when I was diagnosed with aplastic anemia. I was treated at a major cancer center and I was the only aplastic anemia patient in the entire center. Like you, I looked fine from the outside, and it was hard to explain how this rare bone marrow failure disease made me feel so lousy.

    I was one of the lucky patients who, after immunosuppression, steroids, and other treatments, was cured by a transplant from a stranger willing to donate bone marrow to me. Other patients don't have matches or have not found effective treatments, and more research and drug trials are needed to improve treatments and find a cure.

    When I first got sick, it was many months before I met another patient with the same disease. I had to go online to find an email support group. After I was cured, I started helping patients myself; it's something I feel I owe for the help and support that others gave me. Now I've set up a website (with help from two caregivers, one of them my husband) for patients with aplastic anemia and related bone marrow failure diseases. It's called Marrowforums.org and it helps us feel less like orphans as we trade stories, advice, and support, and make friends.

    The best help comes from our doctors, of course. I've met Dr. Maciejewski, and I have nothing but admiration for him. You are in great hands, Mark. The physicians and researches who study bone marrow failure are some of the most dedicated doctors I've ever met.

    • Posted By: mark schreiber @ 01/23/2008 03:21:54

      Comment: Hi RuthLA - thanks for setting up Marrowforums.org. I have read it and I suggest it to other patients and families. Maybe I'll see you at the next AAMDS conference. - Mark

  • Posted By: hmj1972 @ 01/17/2008 10:02:09 PM

    Comment: I am the proud mother of a son with severe aplastic anemia. Diagnoses at age 2, he is now 11. On May 25, 2006, he received the miracle of a bone marrow transplant. He is still recovering and will likely deal with side-effects for the rest of his life. Thank you so much for putting into words what we have felt for 9 years. The doctors(oncologists and bone marrow transplant docs) are angels....fighting this little known disease and giving my son a chance at life. Hunter has been so strong in his fight, he often looks so 'good', even if he is one bleed or infection away from death. Many people look on and think, "What's the big deal, he looks great?" I hope an d pray your article will open the eyes of many people to the struggles of dealing with these 'orphan' diseases.

  • Posted By: hmj1972 @ 01/17/2008 10:00:59 PM

    Comment: I am the proud mother of a son with severe aplastic anemia. Diagnoses at age 2, he is now 11. On May 25, 2006, he received the miracle of a bone marrow transplant. He is still recovering and will likely deal with side-effects for the rest of his life. Thank you so much for putting into words what we have felt for 9 years. The doctors(oncologists and bone marrow transplant docs) are angels....fighting this little known disease and giving my son a chance at life. Hunter has been so strong in his fight, he often looks so 'good', even if he is one bleed or infection away from death. Many people look on and think, "What's the big deal, he looks great?" I hope an d pray your article will open the eyes of many people to the struggles of dealing with these 'orphan' diseases.

  • Posted By: lucky13 @ 01/17/2008 9:02:25 PM

    Comment: I was diagnosed with SAA in 1981 aat the age of 16. I am one of the oldest surviving BMT patients. I commmend you Mark for writing about your story. We all have gone through a tremendous ordeal that has affected so many lives. I had my transplant done in Boston at the Brigham and Womens Hospital. There were so many people who helped me get through my ordeal when I was at my worst. There are two that stand out amongst the rest, They are Dr Joel Rappaport and Carol MCGairagle, the head nusre on the transplant unit. Ithout the transplant my time on earth was short. Even with the transplant my walking out of the hospital alive was 40/60. I am one of the lucky ones to have survived at the time of my transplant. There are those days that we ask ourselves why we were chosen to be a survivor. I know that I do. I could go on and on but this is not about me, this is about each and every person, those who survived and those who did not.

  • Posted By: lucky13 @ 01/17/2008 8:48:23 PM

    Comment: I was diagnosed with SAA in 1981. I am one of the oldest surviving bone marrow transplant patients. I commend you Mark for telling your story. Each one of us has gone through a tremendous ordeal, which has affected so many lives. There are those times in life that we look back and ask why was I so fortunate to be a survivor and others weren't. I know I do. There were so many people who helped me through my ordeal but there are two who stand out among the rest. Dr. Joel Rappaport and Carol Mcgairagle, the head nurse of the transplant unit. I had my transplant done at the Brigham and Women hospital in Boston.

  • Posted By: nancylhare @ 01/17/2008 8:27:37 PM

    Comment: I applaud you for shedding some light about this little-known disease. Next month will mark the 15th anniversary of my bone marrow transplant for severe aplastic anemia. I was one of the few with a sibling able to "help out"; thank you Steve and the University of Arkansas! It is an isolating feeling when you are among so many cancer patients who can't quite seem to understand why you are having "their" treatment, to listen to so many stories of anemia and how relatives were helped simply by taking iron supplements. I felt as though I was trying to make a big deal out of nothing. At diagnosis, I was given less than six months to live and after transplant, a ten year life expectancy. Fifteen years later...all I can say is "Keep the faith Mark" and thank you for bringing more awareness to the orphans.

  • Posted By: bgood @ 01/17/2008 7:46:42 PM

    Comment: I too have SAA and was diagnosed in 1994. Having been down the road of auto-my immune diseases my entire life - my body destroyed my adrenal and thyroid glands I guess I was not totally shocked when it decided that my bone marrow needed to go. So after living with a crit of 22 and on injections of EPO 3 times a week for more than 10 years, imagine my surprise when my crit and platelets started to rise. So we did another bone marrow biopsy - result bone marrow is still hypocellular. Something in my body started producing RBC???s and platelets. It was like the light was turned on again after living in the dark for so long. I have been in remission for 3 years now - counts aren't perfect but what the heck - it's not a 22. So have hope - faith, humor and a strong will just might get us all through the dark. My savior during this struggle was Dr. Chi Dang at Johns Hopkins hospital - the most caring physician I have ever met.

  • Posted By: murphy s @ 01/17/2008 7:13:18 PM

    Comment: Thank you Mark for sharing your thoughts. I know a bunch of people whose aunt has anemia "too". Please keep the humor coming, It is great to share a laugh with someone in the same situation. I wonder how many of us the aplasitc anemia orphans are out there in the world today?

  • Posted By: murphy s @ 01/17/2008 7:01:08 PM

    Comment: Thank you Mark for sharing your thoughts about being a patient with rare disease. I too have people told me about their aunts having anemia, and I remember a lot of doctors in training drop by to see me because it is a kind of "once in a life time opportunity" to see a rare form of rash when I suffer from micro bleeding under my skin from neck down and an allergic reaction to ATGAM at the same time. Please write more essay or even script if you could, laughing at my own situation does make it easier and thank you for the courage to share yours.Murphy

  • Posted By: Dave_P @ 01/17/2008 5:50:03 PM

    Comment: I'm having trouble posting a comment. How does one do so?

  • Posted By: lrmorton @ 01/17/2008 4:01:43 PM

    Comment: The "L" seems to be sticking on my keyboard...I have Aplastic Anemia, and don;t seem to know how to spell it..HA! ( At least I haven't lost my sense of hunor! )Good Luck, and check with Dr. Young...He is amazing!

  • Posted By: lrmorton @ 01/17/2008 3:48:01 PM

    Comment: The "L" is sticking on this keyboard... I have Aplastic Anemia and don't appear to know how to spell it,ha! (at least I haven't lost my sense of humor) Good Luck, and check with Dr. Young...He is amazing!

  • Posted By: lrmorton @ 01/17/2008 3:14:34 PM

    Comment: As a 50 year old health and wellness instructor at George Mason University (Manassas and Farifax, VA) with no pre-existing conditions, you can imagine my shock of being rushed to the ER after completing the Army ten Miler for shortness of breath and brusing. Two days of Intensive Care followed, with whispers of Leukemia. The diagnosis came back as Severe Apastic Anemia, and I was referred to the National Institute of Health in Bethesda, Maryland. I have only been there 2 months, but feel anything but "Orphaned" .The number apastic anemia expert in the world (Dr. Neal Yound and Company) have not only been my healers, but they are my extended family and have treated me as such. I was praised for being in top physical condition, which may help my recovery, so I not only plan to fully recover, but have decided to live to assist and educate others regarding this rare and serious blood condition. So as an educator, feel free to go the the Apastic Anemia Fondation website which is a wealth of information and knowledge, where you will find support groups etc...we even have our own wristbands! They are red and white of course, representing the blood cells in our bodies.

    • Posted By: lrmorton @ 01/17/2008 16:10:37

      Comment: PS.... The "L" seems to be sticking on my keyboard... I have Aplastic Anemia, and don't appear to know how to spell it, HA! I haven't lost faith or my sense of humor, so don't lose yours... Check with Dr. Young if you get the opportunity...he is amazing!

  • Posted By: nyc77 @ 01/17/2008 3:12:51 PM

    Comment: I think this was a great article. I was diagnosed with aplastic anemia last January, and one of the most difficult things for me was there was no one that I knew that had this disease. I believe that at the beginning it made things worse, since I was looking for any sort of support that I could find out there specifcally for aplastic anemia. I have to say, that it is out there, and I have since met other patients, and this article offers even more "publicity" for such a rare disease. I know that if this article came out last year at this time when I was facing my diagnosis, it would have positively impacted my reaction to this disease. Again, great article, and I am glad it was published in such a recognizable magazine!

  • Posted By: gail anne @ 01/17/2008 2:43:24 PM

    Comment: I got cancer about a year after I was treated with ATG for Aplastic Anemia. Fortunately the team at New York Presbyterian Weill Cornell Medical Center were able to give me enough chemo to put the Non-Hodgkins lymphoma into remission without destroying what was left of my bone marrow. So I've had both diseases and Mark is right. People get what cancer is, but they're clueless about AA. I'm fortunate that my blood counts are at a level where I don't need transfusions, and hopefully won't need a bone marrow or stem cell transplant. But I'm afraid of relapse , not to mention recurrence of the lymphoma. I'll be seeing Dr. Neal Young next month. I trust that whatever they learn about me at NIH will be helpful to those who suffer with this orphan disease. I'm glad that Mark has shone a bit of light on this subject.

  • Posted By: susincanada @ 01/17/2008 2:38:41 PM

    Comment: It was three years ago when I was diagnosed with this mysterious disease called Aplastic Anemia. After over a year of harrowing treatments and side effects, I am now living life as normally as possible. I was not a candidate for BMT and so relied on the chemo (ATG, ALG, cyclosporin, etc), and alongside that phase and even beyond I followed some holistic and alternative practices to g et me back on my feet. Yes it is a serious disease, and yes there seems little hope, but with a positive attitude and ownership of your health by avoiding foods and toxins that weaken your body, you have a good chance of feeling better, even if you never get back to "normal". My platelets are permanently low, my WBC are also on the low end, but I have not even had a cold in 2 years, thanks to the vigilance and mindfulness in maintaining my own health. I found support through AAMAC in Canada, and I was fortunate to have a doctor in the town where I live who knew what he was doing. Help is out there, it takes effort and screening to find it. Don't lose hope!

  • Posted By: josh1234 @ 01/17/2008 1:58:09 PM

    Comment: Great article. I was diagnosed with AA on November 21,1994 (my mothers birthday) and had ATG along with all the immune suppresion drugs. I was 21 yrs old. My blood counts would rise and fall for 5 years until I received a successful bone marrow transplant (non related donor) on August 14th, 1999. I had very little Graft Vs, Host and have been off all meds since 2001. My blood counts have been perfect every since and I am leading a normal life. My wife and I even had a baby 16 months ago and I was always told I couldnt have kids after the chemotherapy. Miracles happen and I am proof of that. Faith, focus and positiviy are what kept me and my family going during our hard times. Once diagnosed with this disease, it is your full time job to take care of this and move forward. No other options. Take care and stay focused.

  • Posted By: seley2 @ 01/17/2008 1:32:36 PM

    Comment: I thought I'd quickly chime in since I had (have?) aplastic anemia. (My counts mysteriously went up 1.5 years ago by taking hormones and I've returned to my normal life since then. I can even run in marathons again. Frankly, I got really lucky!). Yes, even if I told people that aplastic anemia was bone marrow failure, I'd hear comments like "oh, I thought you had something serious" or "you look fine, why get any treatment" or "so what, I feel tired often also". I didn't want my peers to know, but needing excuses as to why I was in lab far less than everyone else or started oversleeping constantly despite a multitude of alarms or could no longer run in races or why my qualifying exam had to be delayed because I was too lightheaded one month to study. I found that being on Bruce's Aplastic Anemia forum http://www.aplasticcentral.com/ really helped. Anyway, I really wish you the best. Nice article!

  • Posted By: seley2 @ 01/17/2008 1:32:13 PM

    Comment: I thought I'd quickly chime in since I had (have?) aplastic anemia. (My counts mysteriously went up 1.5 years ago by taking hormones and I've returned to my normal life since then. I can even run in marathons again. Frankly, I got really lucky!). Yes, even if I told people that aplastic anemia was bone marrow failure, I'd hear comments like "oh, I thought you had something serious" or "you look fine, why get any treatment" or "so what, I feel tired often also". I didn't want my peers to know, but needing excuses as to why I was in lab far less than everyone else or started oversleeping constantly despite a multitude of alarms or could no longer run in races or why my qualifying exam had to be delayed because I was too lightheaded one month to study. I found that being on Bruce's Aplastic Anemia forum http://www.aplasticcentral.com/ really helped. Anyway, I really wish you the best. Nice article!

  • Posted By: magpie75 @ 01/17/2008 1:18:53 PM

    Comment: Mark, thank you for writing about AA and how lonely it can be. Like you said there are no groups or even one person in your home town that you can get together with to discuss this disease. When you talk to people about it, they really don't understand and try to give possible cures or vitamins you should take. Thank goodness for online message boards where we can talk with others with the disease. There are good, devoted doctors working on this disease and hopefully they will be getting better treatments all the time. In the meantime, those of us with AA will continue to work with the current treatments and try to live our lives as best we can. Thanks again for telling the orphan story!

  • Posted By: iwfrog @ 01/17/2008 1:15:43 PM

    Comment: I too have Aplastic Anemia and feel much the same as you. When people say oh, my aunt had anemia but she got over it. Even the Gilda Clubs refuse you membership because it is not CANCER. There were no support groups or other patients to talk to. I went through the ATG treatment (alone). I was told I did not qualify for BMT because of age and other medical complications. People say, oh you look great - if they only knew or took the time to undersatnd. I lost my job. People don't understand, they just don't understand.

  • Posted By: caregiver1 @ 01/17/2008 1:15:14 PM

    Comment: Mark,
    My husband too has severe aplastic anemia, had a PBSC transplant and now lives with chronic graft versus host disease. You have written so eloquently what I have observed throughout his challenges. I remember so often thinking that we were in a sea of cancer patients without any real identity of our own. I wore, along with the rest of our family, the yellow LiveStrong bands because of the reminder to keep strong even when it was incredibly difficult and simply because my 5 year old at the time loved yellow. I contacted the AAMDS for a contact and a woman named Marylin just sent me an e-mail telling me how sorry she was but never put me in contact with anyone else, caregiver or patient who had the same experience. I wanted so much to connect with someone who I could share my pain with. You also comment on your 'deceptively normal apperance.' I can't tell you how I used to seethe when people would say, "he looks so good, he MUST be feeling better." Part of me wanted to cry too, because he wasn't out of the woods, not by a long shot. May your struggles lighten day by day, week by week or maybe, as in our case, year by passing year.

  • Posted By: iwfrog @ 01/17/2008 1:14:27 PM

    Comment: I too have Aplastic Anemia and feel much the same as you. When people say oh, my aunt had anemia but she got over it. Even the Gilda Clubs refuse you membership because it is not CANCER. There were no support groups or other patients to talk to. I went through the ATG treatment (alone). I was told I did not qualify for BMT because of age and other medical complications. People say, oh you look great - if they only knew or took the time to undersatnd. I lost my job. People don't understand, they just don't understand.

  • Posted By: DTSEIU @ 01/17/2008 1:05:13 PM

    Comment: Mark- thank you for writing about aplastic anemia. Four years ago my 18 year old son was diagnosed with it. Of course, we had never heard of it. We ran to the internet to read about it and were completely freaked out.
    With the help of excellent doctors at Hershey Medical Center pediatric oncology unit we quickly got to see Dr. Neil Young at NIH in Bethesda. He entered my son in a clinical trail with certain drugs he was working with. My son spent 10 long days at the NIH hospital where they basically killed his own immune system and re-booted it. After taking the drugs for six months, his red cells, white cells and platelets began creeping up. for the past 3 years his levels have benn normal. I recommend you contacting the NIH and Dr Young.. He saved my son's life.

  • Posted By: DTSEIU @ 01/17/2008 1:04:12 PM

    Comment: Mark- thank you for writing about aplastic anemia. Four years ago my 18 year old son was diagnosed with it. Of course, we had never heard of it. We ran to the internet to read about it and were completely freaked out.
    With the help of excellent doctors at Hershey Medical Center pediatric oncology unit we quickly got to see Dr. Neil Young at NIH in Bethesda. He entered my son in a clinical trail with certain drugs he was working with. My son spent 10 long days at the NIH hospital where they basically killed his own immune system and re-booted it. After taking the drugs for six months, his red cells, white cells and platelets began creeping up. for the past 3 years his levels have benn normal. I recommend you contacting the NIH and Dr Young.. He saved my son's life.

  • Posted By: caregiver1 @ 01/17/2008 1:01:19 PM

    Comment: Bev,

    This is not just some run of the mill autoimmune disease that can be treated with quackery. Maybe you should re-read the article and take note that it often requires a BONE MARROW TRANSPLANT. This is an extremely rare disease, like 1-2 people per MILLION get it. It is not as simple as just taking some over the counter remedy. Even if you survive the disease itself and a transplant there are a myriad of complications and potentially life long health and medical struggles to endure. My husband just celebrated his three year mark after having a BMT for severe aplastic anemia and still has many problems, goes to the doctor 1-2 times per week, has never been able to come off of his immunosuppresant meds and gets specialized treatment for chronic graft versus host disease as a result of the transplant itself.

    • Posted By: abono @ 01/20/2008 18:25:03

      Comment: caregiver, try not to get too cross with Bev. The thrust of this article and so many of the responses is that having or caring for this condition opens your eyes to a world most people don't understand and really, really don't wan to see (for good reason). Its near impossible to "get it" until you're there. I'm blown away by so many of the responses here, and astonished at the incredible luck I have had considering the severity of my case - it reminded me that because my case was so long ago, and I've been healthy so long, I wonder if I still "get it".

  • Posted By: joancampagna @ 01/17/2008 7:39:07 AM

    Comment: Excellent article Mark! You are an amazing writer. Unfortunately, what you are going through is no picnic. Thank you for bringing to light the plight of people with "not so popular" diagnoses. I have been a nurse for 19 years, and of course have seen many things in my career. But on the personal side, my mother spent 18 months battling her acute lymphocytic leukemia at the Taussig Cancer Center. Thank you for your article.

  • Posted By: sailorbev @ 01/16/2008 9:36:07 PM

    Comment: Hi Mark, I have an auto-immune disease also. I have been fortunate enough to find a physician that will prescribe Low Dose Naltrexone (4.5 mg nightly) and the progression of my disease has completely stopped. I have my life back. I was almost to the point of having to quit work, but now am vibrant, and symptom free. This drug has no side effects, so you have nothing to lose by trying it. It is a generic drug, but must be compounded, so make sure you get a pharmacy to compound it that puts in a quick release filler. I read your article and felt the need to tell you about my experience. You may have trouble finding a physician that will prescribe it for you, because no pharmaceutical company will perform testing on it, even though it has been approved since 1985 for other uses. Please visit www.lowdosenaltrexone.com and read more about how it works. It allows the immune system to regulate itself and stop attacking your good cells. My husband and I are both on it and it has been a miracle. It only costs $20 a month. If you can't find a good pharmacy, let me know. I can refer you to one that compounds for me. I hope you will try LDN and find that you can get your life back as well. It's worth a try since there are no side effects. Please research the work of Dr. Barnard Bihari and you can learn much more. Good luck. Bev from Kentucky.

  • Posted By: sailorbev @ 01/16/2008 9:35:43 PM

    Comment: Hi Mark, I have an auto-immune disease also. I have been fortunate enough to find a physician that will prescribe Low Dose Naltrexone (4.5 mg nightly) and the progression of my disease has completely stopped. I have my life back. I was almost to the point of having to quit work, but now am vibrant, and symptom free. This drug has no side effects, so you have nothing to lose by trying it. It is a generic drug, but must be compounded, so make sure you get a pharmacy to compound it that puts in a quick release filler. I read your article and felt the need to tell you about my experience. You may have trouble finding a physician that will prescribe it for you, because no pharmaceutical company will perform testing on it, even though it has been approved since 1985 for other uses. Please visit www.lowdosenaltrexone.com and read more about how it works. It allows the immune system to regulate itself and stop attacking your good cells. My husband and I are both on it and it has been a miracle. It only costs $20 a month. If you can't find a good pharmacy, let me know. I can refer you to one that compounds for me. I hope you will try LDN and find that you can get your life back as well. It's worth a try since there are no side effects. Please research the work of Dr. Barnard Bihari and you can learn much more. Good luck. Bev from Kentucky.

  • Posted By: sailorbev @ 01/16/2008 9:32:42 PM

    Comment: Hi Mark, I have an auto-immune disease also. I have been fortunate enough to find a physician that will prescribe Low Dose Naltrexone (4.5 mg nightly) and the progression of my disease has completely stopped. I have my life back. I was almost to the point of having to quit work, but now am vibrant, and symptom free. This drug has no side effects, so you have nothing to lose by trying it. It is a generic drug, but must be compounded, so make sure you get a pharmacy to compound it that puts in a quick release filler. I read your article and felt the need to tell you about my experience. You may have trouble finding a physician that will prescribe it for you, because no pharmaceutical company will perform testing on it, even though it has been approved since 1985 for other uses. Please visit www.lowdosenaltrexone.com and read more about how it works. It allows the immune system to regulate itself and stop attacking your good cells. My husband and I are both on it and it has been a miracle. It only costs $20 a month. If you can't find a good pharmacy, let me know. I can refer you to one that compounds for me. I hope you will try LDN and find that you can get your life back as well. It's worth a try since there are no side effects. Please research the work of Dr. Barnard Bihari and you can learn much more. Good luck. Bev from Kentucky.

  • Posted By: T-She @ 01/16/2008 6:11:21 PM

    Comment: Hi Mark, I too had severe Aplastic Anemia, much to my shock after being healthy and fit all my life until I was 47. I felt much like you, where all of a sudden Breast Cancer would have been an easier disease to be diagnosed with and fight. My brother turned out to be a perfect match for a Bone Marrow Transplant and I am now 3 months post transplant and feeling very well. I have a long way to go in recovery though and am watching for signs of Graft Vs. Host Disease and other infections that may occur at any time with a still new and very immature immune system. I have a positive attitude though that I will recover. I had one ATG treatment that seemed much more difficult to get through than a Bone Marrow Transplant. Also with the BMT I was on rejection drugs for a much shorter time period. The trick for you is to protect yourself from infections and sick people in public until your immune system gets stronger with an ATG treatment or a BMT. Keep positive, get treatment right away and I pray that your SAA is cured.
    T-She from Canada

  • Posted By: wish1 @ 01/15/2008 11:01:33 PM

    Comment: Hi Mark,
    As a med tech hematologist, I discovered my oldest daughter's platelet count of 4,000. That was on a Tuesday - by Thursday, we knew she had SAA, and by the next Tuesday, she was an in-patient at Fred Hutchinson Cancer Research Center in Seattle. Fortune smiled on her, and she had a perfectely matched HLA sib as a doner. It's 14 years later, and she's doing well - now has 3 daughters of her own.
    In all of my years in this business, I've only known 2 patients with SAA, but dozens with leukemia, and hundreds with other cancers.
    It sounds as if you've found respectful, thoughtful physicians, who are giving you excellent information on options.
    I do hope t