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Wanted: A National Focus on Autoimmune Diseases
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by Virginia Ladd, Radiology Technologist
summarized by Tom Sullivan
The guest speaker at the September 1997 TCCSSG General Meeting was
Mrs. Virginia Ladd, President & Executive Director of the American
Autoimmune-Related Diseases Association (AARDA). She was very active
in Lupus associations prior to starting AARDA, and in 1985 she founded
the Chronic Illness Awareness Coalition of Michigan.
The description of what constitutes an autoimmune-related disease is
still under discussion. While purists and everyone else will agree on
30 or so diseases, differences of opinion occur on the next 50. For
example, purists will not agree that a disease which has an outside
trigger is autoimmune-related. They say that only those that are self
triggered can be considered. But purists not withstanding, the
numbers of autoimmune-related diseases are growing.
As an example, Mrs. Ladd cited two that have been reported on in just
the last year. Where psychiatric diseases were not previously thought
to be connected with autoimmunity, autism is now being investigated
for a possible link. And Denise Dador on WXYZ-TV, Channel 7s Healthy
Living, has reported on a possible connection in children between
strep and compulsive behavior. While both of these findings are
preliminary, they do indicate the need for basic research in
autoimmunity itself.
There is known to be a familial aspect to autoimmune-related diseases.
Some basic research on the family correlation has been initiated by
the Office of Women's Health. However, it was also noted that, even
in the case of identical twins, who by definition have the same genes,
if one twin has Type 1 Diabetes or Lupus, there is only a 60% chance
that the other twin will also have the disease. So there is some
other factor involved than just genes.
As a further point, while Type 1 Diabetes and Lupus are both
autoimmune diseases, they are distinctly different diseases in their
own right. However, the gene loci for both diseases are,
interestingly enough, found on the same chromosome.
The current high profile of AIDS has definitely raised the awareness
about our immune system and provided good basic genetic information.
The fact that the immune system is the bodys defense system protecting
us against bacteria, viruses and foreign antigens is well established.
The fact that we have a natural immunity to what surrounds us and that
it builds up with exposure is also well known; for example, there are
more than 110 cold viruses, so were not always catching the same cold.
And likewise, we know that immunizations for things like smallpox and
the like are needed and force the body to produce antibodies to these
diseases which protect us forever.
One way to view the immune system is to compare it to a computer
application program or a game program. It makes the computer function
and function well. But one glitch in the program and the computer is
down completely. AIDS is so devastating because the glitch is that a
major component of the immune system, the T-cells, are destroyed.
This eliminates any communication in the immune system about what,
where and how to fight any invaders, and the body is then susceptible
to any and all other viruses.
But what are autoimmune-related diseases? They could also be
considered as self-immunity problems. That is, the bodys immune
system fails to recognize itself and considers itself as a foreign
invader to be destroyed. This hypothesis was considered absurd 40
years ago. In fact, a paper proposing autoimmunity as the explanation
for hypothyroidism was bluntly rejected for publication at that time.
One of the papers authors? - Dr. Noel Rose, a current member of the
AARDA advisory board.
There is apparently some autoimmunity in all of us. Why? We dont
know. It also seems to get stronger as we get older. We know what
causes autoimmune-related disease: The immune system goes out of
control. However, we dont know how or why the immune system goes
haywire.
What Mrs. Ladd and AARDA are encouraging is a national focus to seek
the underlying cause of autoimmunity. They would like to see everyone
involved with autoimmune diseases pushing together for basic research
on autoimmunity. Because all the coalitions concerned with HIV and
breast cancer united, substantial basic research is being done at many
institutes and centers for cancer. There is no comparable basic
research being done for autoimmunity, and wont be until all
autoimmune-related coalitions also unite.
One of the basic questions that needs answering is, what are the many
triggers of the autoimmune diseases? For example, we know that the
sun is a trigger for Lupus. Likewise, strep is a trigger for
rheumatic fever. However, antibiotics will stop the strep early and
no rheumatic fever develops.
Also, is there an autoimmune gene? Some people have a genetic
predisposition to autoimmune diseases - but never get them. Then is
there more than just a trigger? There are many basic questions to
answer.
One of the major difficulties with autoimmune diseases is getting them
diagnosed. Somebody has to think of the disease. Once thought of,
diagnosis is relatively simple. However, symptoms are all so similar
and the patient often receives a "chronic complainer" evaluation. A
history of complaints is seldom ever available until after the disease
is thought of. A familial history of autoimmune diseases is rarely
asked for when taking an initial patient history. And even if it were
asked, would patients know their familys autoimmune disease history?
Probably not. So, the sequence of events that is needed is to educate
the patients about autoimmune diseases, get the families to understand
their histories and what autoimmune disease is about, educate
physicians, and finally have the physicians correlate patient symptoms
and family history with an appropriate autoimmune diagnosis.
Current medical diagnostic practice results in expensive, multiple,
unnecessary testing and visits to specialists, which is not encouraged
in managed care systems. A multi-disciplined approach (which doesnt
exist) would, however, produce a faster and ultimately cheaper managed
care expense by providing earlier treatment and more damage
prevention. There was one center in Detroit but that has been closed.
Some effort is being made to initiate a program at Johns Hopkins
Research Center.
There are currently no good epidemiological studies to determine if
autoimmune diseases are increasing or not. One small study has been
conducted, but it is insufficient to make a case for research dollars.
So while each of our diseases (celiac, lupus, rheumatoid arthritis,
etc.) may be rare by itself, it is not rare if it is considered as
part of basic autoimmunity. As with cancer and AIDS, everybody must
work together in order to research the underlying autoimmune
questions.
AARDA is conducting its own survey at their website on the internet,
for anyone who wishes to participate. To access the survey go to
<http://www.AARDA.org> and click on "Take Our Survey" to complete the
questionnaire.
The question and answer period included two comprehensive queries:
"How prone is a person to more autoimmune diseases if they already
have one?" and, "How does one strengthen ones immune system?" For
the first question Mrs. Ladd stated that one is more prone to
additional autoimmune diseases if you already have one. In fact, if
there is a systemic autoimmune disease, then one could conceivably
develop another disease each decade.
As regards taking supplements to strengthen the immune system: Be
very cautious. First, do no harm. Remember, a part of the whole
system is already hyperactive. In many booster products, it is not
known if the active ingredient can cause problems. And we dont know
if an attempt to boost the immune system will trigger it out of
control. So be very careful.
Second, take control. You are your own best advocate. Challenge
yourself to live with the disease. Focus on how TO DO, not what you
cant do. Have a positive attitude. Its amazing the impact of the
placebo effect on these diseases. In the case of rheumatoid
arthritis, for example, improvement has been shown in 40% of those
taking placebos. [A placebo is a pill or liquid which a patient
takes, thinking it contains some beneficial medicine when in fact it
doesn't contain any medicine at all. Placebos are most often used in
studies to see the real difference of an experimental treatment,
because it is known that just believing a treatment is helpful
provides some beneficial results in many cases.--ed.]
And lastly, rest and pace yourself. Rest is very restorative in
autoimmune diseases. So listen to your body. When you have what can
only be described as that yucky feeling, stop. Dont fan the internal
inflammatory response. Rest. And because yucky times will happen,
dont try to do everything you can or must do on those days or at those
times when youre feeling fine. Our bodies cycle. Just make your
cycle a two week cycle - not a one day cycle. Then your ups and downs
will even out and things will get done on a less stressful basis for
you.
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