Falling Into a Medical Abyss

Mark. What a wonderful article. Thank you so much. I have dreams of someday be able to raise so much awareness for AA that it too will become as commenly spoken of as cancer. I have had moderate (not severe) AA for 11 yrs. now, and just in the past 3 years or so, our fine Doc's at NIH have found that my "rare" form of the disease is more than likely genetic!! Which poses the problem that I am unable to be treated with immunosuppressive therapies, because my DNA will keep reproducing this mutated genetic gene that is causing the Bone Marrow to fail. I do have a BM match with my brother, but there again, not "positive" because it is genetic that if i recieve his bone marrow that it might all just come back.... to add a little icing on the cake, my (soon to be ex) husband, does NOT believe that I am sick, because I don't "LOOK' sick, and he feels that it is just a case of a LAZY wife. Amazing... i know, I guess that is why I am divorcing him!! haha. He is military, so he was rarely at any of my doctor appt.'s & never made it to a single one of my transfussions... Thank God I have a wonderful support from friends and family. Although, I am still a bit of a medical mystery as to why my disease has not become more agressive, despite an almost non-existant ANC, and a BM cellulartity of less than 5%, plus the bi-monthly blood transfussions (my WBC lingers a high 2, and HBG high 7's low 8's) I function pretty well, and am grateful everyday that I am able to wake up and function as a semi-normal person.
I have been on disability for over 3 yrs., so I keep myself busy with Dr. appts. (of course) traveling back and forth to NIH (fm TX) and caring for my amazing daughter (that also has the mutated gene, but is not affected as of yet). Someday I will be healthy enough to raise that awareness like I'd like to, and make a difference like you have. Thank you again, and Godspeed.

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

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

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.

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

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

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!

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

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

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.

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.

You can contact www.aamds.org for more information

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