Falling Into a Medical Abyss

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.

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.

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.

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.

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

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

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!

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!

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!

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.

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!

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.

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!

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!

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!

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.

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.

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.