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 Myleodysplaisia Refractory Anima (MDS/RA) and
Paroxysmal Nocturnal Hemoglobinuria (PNH), ITP (Immune (Idiopathic)Thrombocytopenic
Purpura), TTP (Thrombotic Thrombocytopenic Purpura) and other
"Labels".
You can learn more about this
diseases and other so called "autoimmune diseases" (immune
system out of balance and attacking good cells) elsewhere in the site by searching on the word(s) from the search
page. You may also want to pay attention to the "Short
List" as it is a good jumping off point. It includes a link
to the Stem
Cell Research Page if you want to do some serious investigation about
what is being done to combat illnesses at a the micro-biotic level.
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 is a medical way of saying they
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 Hodgkins 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). There are more detailed discussions throughout
the site and I invite you to actively participate by becoming a member,
participating in the forum, adding links
you have discovered.
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!
Click here for an article by Dr. Neil Young
of the National Institute of Health.
Here is a fuller (and more complicated, I might add) definition of aplastic anemia from an online
Medical
Dictionary:
This form of anemia
(Too few red
blood cells in the bloodstream, resulting in insufficient
oxygen to tissues
and organs)
occurs when the bone
marrow ceases to sufficient
red and white
blood cell production.
It may be induced by exposures
to high levels
of toxic chemicals,
radiation and
certain drugs. AA is generally unresponsive to specific
therapy, often
accompanied by granulocytopenia
(a reduced number
of white
blood cells)
and thrombocytopenia
(a decrease in
the number of platelets
in the blood,
resulting in the potential
for increased bleeding
and decreased ability
for clotting),
in which the bone
marrow may not
necessarily be hypocellular or hypoplastic (underproduction of red
blood cells) but fails to produce
adequate numbers
of peripheral blood
elements. The term
actually is all inclusive
and most probably
encompasses several clinical
syndromes. For an even more thorough and
medically correct discussion click here.
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. |
