Sunday, April 22, 2007

Sorting Through The Theories and Facts:

I was shocked when I stumbled upon one of the latest theories as to why I am ill. The theory is that I am sick because I may be a survivor of spontaneous remission from cancer.

Spontaneous Remission? Wow, now that was an article that caught my attention. I was glued to my computer screen. Could my over active immune system actually be triggered by my body's own attempts to heal itself?

JO-1 antibodies are extremely rare, so rare in fact that they class this illness into the rare disease category of Myositis. We are classed there because having jo1 antibodies is an indicator that we will also suffer from polymyositis or dermatomyositis.

Although they do not know why people like me are ill there are a number of theories as to why this illness may develop. One of the most fascinating theories that I have read is that we may actually be survivors of spontaneous remission from cancer.

They do know that myositis and cancer are somehow entangled but they are not quite sure how. 

Polymyositis / dermatomyositis has a very high incidence of cancer connected to it. Approximately 30% to 40% of us will be diagnosed as having cancer at the same time that we are diagnosed with our myositis.

If a cancer is discovered and treated effectively, then not only does the cancer disappear, but often times so does the myositis also disappear. This lets those who investigate this illness know that cancer and the myositis are somehow entangled. The question is how? What is the link?

Which is the very reason why there is a theory based on the fact that people who suffer from this illness may actually be spontaneous remission survivors. The theory goes that my immune system detects a cancerous tumor within my body and that it launches a major attack to destroy this invader.

The theory is that my body's assault on the tumor is successful. My immune system is strong enough to destroy the cancer within my body but, unfortunately the tremendous degree of strength needed to accomplish this, also damages my muscles. It is this muscle damage which then creates a continuous immune system response within my body.

A recent article in the New York Times explains the recurring flares and their link to the theory of spontaneous remission in this way: "In a study published two years ago in The Journal of Experimental Medicine, Dr. Livia Casiola-Rosen, together with Dr. Rosen, Dr. Levine and others, reported that the antigens that produce the immune response are present in normal muscle tissue, but at low levels. They are much more prevalent in myositis patients' cells and in muscle cells that are regenerating, as after an injury.

Dr. Rosen hinted that a vicious cycle occurs when damaged muscle cells start to repair themselves. These cells express higher amounts of the antigens, causing the immune system to respond; the immune response causes further damage to the muscle, which in turn repairs itself, its regenerating cells expressing even more antigens and continuing the cycle. 

Even more intriguing, Dr. Rosen said, was the study's finding that the antigens associated with myositis are expressed at increased levels in tumors of the breast and lung. The signature of the antigens expressed by tumors is the same as the signature of the antigens expressed by regenerating muscle cells."

So is it possible, am I here today because my body gave me a spontaneous remission from cancer, am I ill today because I am a Cancer survivor? You can read the full Myositis New York Times article.

My illness is very rare, and although they do not know why people like me have this illness, there are a number of theories as to why it develops. The illness itself has a very high incidence of cancer associated with it and one of the theories is that we are actually survivors of spontaneous remission from cancer.

I was 26 years old when I first became ill. My disease presented itself with a severe arthritic flare up. In addition to the stiffness and pain of the arthritic symptoms, I was also having difficulty swallowing, and breathing. I was experiencing muscle spasms as well as severe fatigue, dopiness, and confusion.

My life was dramatically impacted by my illness's sudden onslaught and, from that point on, my life became a battle against the recurring flares. Despite the muscle involvement, breathing and swallowing difficulties, I was diagnosed as having severe rheumatoid arthritis.

About 2 years after my initial flare up it was discovered that I have a little something called a JO-1 antibody on my immune system. With this new information they were able to revise my diagnosis from one of arthritis to one of polymyositis.

It would be years and much frustration later that I was to learn that JO-1 antibodies are actually a marker for people with a distinct syndrome known as "anti-synthetase syndrome".

People with antisynthetase syndrome tend to suffer from polymyositis or dermatomyositis, plus polyarthritis, plus interstitial lung disease, plus various other inflammatory illnesses, and syndromes. In other words, instead of having one singular illness, we have an overlap of inflammatory illnesses and syndromes.

There are a number of aspects which make my illness unique from others. It is as though I do not suffer from one singular disease, but instead have a number of inflammatory illnesses that seem to come and go at any given time, and in varying degrees of intensity. I may suffer from one or a complete onslaught of the various aspects of this illness at any given time. There does not appear to be a lot of rhyme or reason to any of it.

People with my illness are sensitive to the sun, as well as other forms of lighting such as florescent bulbs, and the new energy efficient CFL bulbs. We must restrict our exposure to these elements as they can increase skin involvement and send us into an inflamation flare. This sensitivity to light also means that we must watch our vitamin D levels carefully.

We are very diet sensitive and have to watch carefully the foods which we consume. Any nutritional imbalance or food sensitivity will set our illness off.

Our immune systems seem to be hair trigger sharp, perhaps because our immune system is always watching for a danger to it, or perhaps due the immune suppressants which most of us must take. This means that we must avoid people with the flu, or a cold, or any other exposure which might risk our health.

I have adapted to living a modified lifestyle to suit my illness. This means that I have incorporated numerous alternative therapies into my life, and although I am not cured, I can usually live comfortably within my illness.

Extreme fatigue is a major issue with my illness so this is one of the areas in my life that I have had to work around. Living an alternative lifestyle affords me the extra energy that I need to truly enjoy my life. This is one of the main reasons why I turned to the Internet. It could act as a means of social, economic, and emotional support without draining my limited energy levels.

I hope you enjoyed my story and found the theory of spontaneous remission as fascinating as I do.

My illness is very rare and, although they do not know why people like me have this illness, there are a number of theories as to why it develops. The illness itself has a very high incidence of cancer associated with it and one of the theories is that we are actually survivors of spontaneous remission from cancer. But this is theory and yet to be proven.

The good news is that the connection between my illness and cancer may open new research into finding a cure for people like me. Cancer does get a lot more research dollars invested into it than a very rare illness like myositis. And who knows, maybe researching people like myself may lead to new inroads into cancer survival rates, maybe we hold a key that Cancer researchers could use to unlock the mysteries they so desperately search to solve.

For information on myositis or to find a support group for this rare illness please visit:
For arthritis information or support please visit:

Remember To Take Time To Play
It's Important!

When you participate in pleasurable activities like smiling, laughing, exercising or playing, your brain does an amazing thing and releases a little chemical message known as an endorphin.

These endorphins are feel good messages that have the power to actually remove physical and emotional pain. They travel down the spine, and then throughout your body, sending a feeling of well being as they go.

These endorphins not only have the ability to relieve pain but they also have the power to make you feel happy.

Take time to play
It really is important

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