Aplastic Anemia Basics

 

Welcome to the Aplastic Anemia Website. You are likely in search of information for yourself or a loved one who has entered the dreadful world of bone marrow diseases.  This site is dedicated to you and has been in place since 2001 when I was diagnosed.  I wrote a book that summarizes much of the information you would find on this site.  You can preview the book for free by clicking Aplastic Anemia and other Autoimmune Diseases.

The book took me nearly two years to write, was carefully researched and chronicles my alternative approach to dealing with the illness.  It was reviewed by several medical professionals and contains a wealth of information designed to help you heal yourself. 

I have been using alternative methods to heal myself since 2001 and am living proof that alternative/holistic healing works. If you are here, then either you or someone you know has likely been diagnosed with a disease that modern medicine does not know how to cure. In my case, the label assigned is Aplastic Anemia, a condition that effects between 2 and 6 people per million citizens in the United States and a similar percentage internationally.

If you prefer to follow the conventional approach to healing your illness, this is also an excellent site for seeing what others have done.  

Aplastic Anemia is just one example of a host of related disorders that are a direct result of the toxins and chemicals in our environment.  We ingest chemicals, eat highly processed foods, are exposed to countless environmental poisons and do not know how to combat the many illnesses that result from these abuses to our bodies. The conventional wisdom is to prescribe some drug to mask the symptoms rather than determine what is really causing the problem.  On this web site or through the use of my book you can begin to figure out what is really wrong and cure your condition rather than simply mask the problem.

Because Aplastic Anemia is such a rare disease, it is not officially tracked or reported to the National Institute of Health.  You can read Stories of other patients on an archived version the original website here and see how they coped with the illness.  For some statistics on Bone Marrow Transplant Success Rates, please see chart below:

NMDP Transplant Outcomes for Non-Leukemia

Disease

Severe Aplastic Anemia
Myelodysplastic & Related Syndromes
Non-Hodgkin’s Lymphoma
Other Non-Malignant Diseases

# of
Transplants

381
895
490
657

Kaplan-Meier
5-Year Survival*

40% ± 5%
28% ± 3%
20% ± 5%
44% ± 4%

June 2001 *with 95% Confidence Interval

*Source = National Marrow Donor Program Web Page which has now been updated with 2005 results – See below.  My reading is that about 50% of the SAA people who do BMT are dead within 5 years. 

Also please realize this includes exact match siblings that are supposedly 90% successful so the odds for surviving a MUD (Matched Unrelated Donor) for more than a few years are much worse! 

The chart and this site were not designed to frighten you but hopefully the information presented will cause you to seriously question the approach you will take regarding your treatment.  This article is designed to give you the facts as I understand them.  I am an AA patient myself and have been reading, listening and researching since January, 2001.  The conclusions I draw are strictly my own, but I believe this information to be factual and down to earth.  It is an excellent primer for someone newly diagnosed.  It is not sugar coated because this is a chronic, potentially fatal disease.  I am choosing to deal with AA as an enemy invading my body and I am going to fight with everything I have to beat it. As you hopefully saw by my journal, I am winning my personal battle.

Since August of 2001, I have been following a regimen that is considered an alternative to modern medical treatments.  It appears to be working for me and a few others and I recommend that you at least consider this less radical approach before you subject your body to chemotherapy, ATG, Bone Marrow Transplants and other such invasive techniques.  I was admittedly very skeptical about the alternative approach and did the ATG treatment twice, had serum sickness that almost killed me and have experienced two serious blood infections that had my temperature over 105 degrees. I was on more meds that I could count including cyclosporine, steroids, folic acid, and about ten more before I came to my senses.  My approach is documented at the Wellness Page and in my book that you can preview and order here.

We patients and the few Doctors who understand the disease are left to fend for ourselves to a great degree. It often takes a long time for the illness to be properly diagnosed and even then it may be compounded by very similar diseases including Myelodysplasia Refractory Anima (MDS/RA) and Paroxysmal Nocturnal Hemoglobinuria (PNH), ITP (Immune (Idiopathic) Thrombocytopenic Purpura), TTP (Thrombotic Thrombocytopenic Purpura) and other “Labels”.

One harsh reality about Aplastic Anemia is that you are not likely to have your normal active lifestyle back again.  You may survive, and you may live several more years, but you will definitely have a decreased energy level, you will tire more quickly and you will notice an inability to concentrate properly. Like many of us, you will also be likely to require weekly or bi-weekly blood and platelet transfusions. (I am becoming transfusion independent as of 10/04/02). 

In that case, you are essentially living off someone else’s blood cells because your bone marrow is incapable of producing the cells you need.  Unfortunately, the cells you receive from others only last a limited amount of time and if your body does not produce the cells, you will be spending a long time in transfusion clinics preceded by CBC’s (Complete Blood Counts) which analyze your blood cell counts vs. normal individuals.

The main problem behind AA is that our three main blood cells (Red, White and Platelets) are not present in our bodies in sufficient number to fulfill their respective roles:

    Red  – Carry life sustaining oxygen to all body cells and remove C02

    White – Fight Disease and attack foreign bodies or “antigens”

    Platelets – Perform the necessary clotting process

The fundamental concept behind Aplastic Anemia is that our blood cells are not maturing properly and/or our immune system is destroying them before they are released into the blood stream.  Most cases of Aplastic Anemia are considered to be “idiopathic” which a medical way of saying they is really don’t know what causes the disease. Many patients and some MD’s believe it is linked to benzene or other toxic substances in our environment. 

In my personal case, we believe it is also linked to a stupid habit I had of popping golf balls into my mouth to clean dirt off before putting. (I didn’t pay any attention to the fact that the golf ball was covered with pesticides and fertilizer! We also believe it is a result of my immune system malfunctioning on a variety of levels from having developed “Multiple Chemical Sensitivities” and allergic reactions over my entire lifetime.  I have an inherited pre-disposition to blood related diseases (my father had Hodgkin’s and my sister has Lupus) and my body has essentially shut down a large part of its immune system due to overexposure to certain toxins.

A large amount of laboratory data supports the hypothesis that in most patients with acquired aplastic anemia, our lymphocytes attack our stem blood cells before they are allowed to mature into fully functioning cells.  Researchers are currently not sure what to do about this phenomenon other than to treat symptoms which is the standard fare for most of modern medicine. The standard treatment for AA is one of the following strategies:

1. An option for people who are lucky enough to have an exact “HLA” matched sibling is a matched sibling (one of your brothers or sisters has the same HLA typing as you do) transplant. The odds are not the greatest, but it is the current preferred “curative” strategy.

2. Treat the symptom and hopefully put the disease into remission using serum from a horse or a rabbit (ATG) followed by daily doses of cyclosporine which is a medication used primarily to address potential rejections by organ transplant patients.  They stumbled onto the fact that cyclosporine can put AA into remission a few years ago so that is what they are using as a primary remission strategy.  It works for 75% of patients, but did not work for me.  Others recommend similar extremely toxic drugs including Cytoxan and MMF. 

3. Undergo a Matched Unrelated Donor (“MUD”) transplant.  The odds for survival are very low (less than 25% of patients survive and lead anything close to a normal life).

4. As mentioned above, I discovered a fourth alternative which is fundamentally a Natural Healing Strategy which you may read about elsewhere on the site.  I have now been at this long enough to feel pretty comfortable in recommending that you at least consider this approach.  If I had it to do over again, I definitely would have tried the alternative approach first before going through the ATG etc.  I am not necessarily suggesting that you listen to me over your caretakers, but I have chosen this alternative and it is working for me.  I personally don’t like the odds of a transplant and I was not responding to cyclosporine.

Thanks for the visiting the site and please stop back often as I along with many others are constantly researching the illness and posting what we find – (both conventional and alternative methods). 

Our fundamental goal as AA patients is to become transfusion independent, put the disease into remission or cure it altogether and ultimately to get our lives back!

Sincerely,

Bruce Lande Updated 6/23/2008
DX SAA 1/01 ATG/Cyclo X2 No Response – Counts remain low but I am able to function within limits without the use of drugs.

January 10, 2019 Comment – I will update this page at a later date.