I was shocked when I stumbled onto a rather unique theory as to why I am ill. The theory is that I may be sick because I am a survivor of spontaneous remission from cancer.
I have a rare antibody which causes me to suffer from an autoimmune disorder. They don't yet know if I was born with this antibody, predisposed for it, or if it is something that I unfortunately acquired at some point in my life. JO-1 antibodies are extremely rare, so rare in fact that they class these into the rare disease category of Myositis. We are classed there because having jo1 antibodies is an indicator that we will also generally 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 around the same time that we are diagnosed with myositis.
If a cancer is discovered and treated effectively then not only does the cancer generally disappear but often times so does the myositis also go into remission. 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 the immune system detects a cancerous tumor within the body which causes it to launch a major attack to destroy this invader.
The theory is that the body's assault on the tumor is successful. The immune system is strong enough to destroy the cancer within but unfortunately the tremendous degree of strength needed to accomplish this also damages the muscles. It is this muscle damage which then creates a continuous immune system response within the body.
A person in one of my support groups discovered this intriguing information and it created a lively discussion on the possibility of our being ill because we are survivors of a cancer we did not know we had.
An article in the New York Times seemed to back up this theory. It explains the recurring flares and why our immune system reacts to attempts to repair damaged muscle:
"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."
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 originally 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 along with various other inflammatory illnesses and syndromes. In other words instead of having one singular disease we have an overlap of inflammatory disease and syndromes.
There are a number of factors 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 UV rays of the sun as well as to some 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 inflammation flare. This sensitivity to light also means that we must watch our vitamin D levels carefully.
We are diet sensitive and have to be careful which foods we consume. Any nutritional imbalance or food sensitivity will set a flare into motion. Our immune system seem to be hair trigger sharp, perhaps because it is always watching for a danger or perhaps due the immune suppressants which most of us must take as these weaken our body's ability to fight. This means that we must avoid people with the flu or a cold and be wary of any other exposure or infection 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 acts 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 condition 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 and potentially open new health inroads for people with cancer.
*Update: New antibody research has narrowed down the specific antibodies related to cancer within myositis patients. If I am reading things correctly the jo-1 is excluded from this group. As research continues diagnosis for those affected will be so much more relevant.