Falling Into a Medical Abyss

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

    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 12:43:10 AM

      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: aquarius40 @ 01/22/2008 6:52:04 PM

    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

    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: skilovr @ 01/22/2008 1:13:00 PM

    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

    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

    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: isabela @ 01/19/2008 6:49:20 PM

    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 7:22:37 PM

      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 10:06:43 PM

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

    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: caregiver1 @ 01/17/2008 1:01:19 PM

    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 6:25:03 PM

      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: abono @ 01/20/2008 6:04:28 PM

    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

    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: Dave_P @ 01/18/2008 6:29:27 PM

    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 7:13:46 PM

      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: isabela @ 01/19/2008 6:23:33 PM

    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: suebtender @ 01/18/2008 3:18:58 PM

    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

    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: wish1 @ 01/15/2008 11:01:33 PM

    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 that you can find some other patients with SAA, because I think that the sharing is a part of healing.
    And, I applaud the fact that you've opened up the discussion about orphan diseases, by sharing such a personal story.
    Good luck.

    • Posted By: momadvo @ 01/17/2008 11:37:22 PM

      Mark,
      Thank you a million times for shedding light on Aplastic Anemia and the wonderful Dr. Maciejewski! Our son was diagnosed with AA nine years ago. He is still struggling but thanks to Dr. Maciejewski we have hope for the future. The AA family is small but it is mighty. Online support from Marrowforums and Aplastic Central offer a lifeline when things are looking bleak and the AAMDSIF continues to lobby for all of us. We are so thankful.

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

    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

    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.

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