September 21st is National Myositis Awareness Day and it is a day of hope for the thousands of individuals who suffer from a very rare and often misunderstood class of muscle myopathies known as Myositis.
If you have never heard of Myositis then this is why it is so very important for you to recognize the significance of September 21st to those who suffer from this rare illness.
There is no cure for myositis. There is only hope. I am one of the individuals who suffers from Myositis, and I know how devastating it can be to suffer from a very rare illness that so few people can understand, or comprehend.
The rarity of Myositis, and lack of information into it's cause and treatment, are the reason why September 21st was designated as National Myositis Awareness Day.
Myositis is a very rare muscle disease. There are many individual forms of myositis, but because these illnesses are so rare, they are clumped together under the heading of Myositis.
Myositis is an autoimmune disease. This means that the body's immune system goes awry and attacks, and destroys, what would otherwise be healthy body tissue.
The four current major groupings of Myositis are: Inclusion-body Myositis, Polymyositis, Dermatomyositis, and Juvenile Myositis.
To break this down in more simplified terms: poly means multiple, myo is muscle, and sitis is inflammation. Myositis is multiple muscle inflammation. For those who suffer from Dermatomyositis there is also skin inflammation as a major factor of their illness.
The Myositis illnesses all have muscle inflammation at their base, but there is generally also an overlap of other inflammation, or other inflammatory illnesses as well.
Rheumatoid arthritis, Sjogrens syndrome, Systemic Lupus, Scleroderma, Raynaud's phenomenon, as well as lung, intestinal, circulatory, and many other medical issues can overlap in Myositis.
Each form of Myositis is individual in it's symptoms and treatments.
National Myositis Awareness Day is a day of dignity and hope. It is a day that may bring a better quality of life for those who suffer from Myositis. September 21st is now a day that can increase understanding for those of us who suffer from this rare illness.
I was 26 years old when I first felt the full fury of Myositis. I went to bed with my hands feeling a little stiff but I woke to find that my entire body had stiffened up like a tin soldier. I could barely move and the pain throughout my muscles and joints was unbearable.
I was quickly diagnosed as having severe rheumatoid arthritis and a number of anti-inflammatory drugs were initiated with little improvement to my health. About two years after I became ill, they discovered that I had Jo1 antibodies, and my diagnosis was changed to that of Polymyositis.
I thought that an accurate diagnosis would be the beginning of a cure but instead it was just the beginning of a very long frustrating initiation into chronic illness. I was soon to experience the many painful wounds of misunderstanding that come along with the physical suffering of this extremely rare illness.
Imagine walking into a specialist's office in hopes of receiving answers, and instead being told that your complaints do not exist. That is what happened to me and more than just once.
I was told that I did indeed have Jo1 antibodies, but that although I had Polymyositis, that I should not be suffering from breathing issues, or swallowing issues, or the severe fatigue issues that I was describing. The final topper was when I was also told that I was not in pain, because when the specialist pressed on the lumps which had grown on my joints, I did not cry out.
I was almost convinced that I just might be a hypochondriac. If it were not for the constant pain, stiffness, breathing difficulties, and choking that I faced each day then I just might have believed that specialist. Instead I refused to see him again. I stuck with my local physician, and I began to research polymyositis on the internet, and to treat my illness through what I discovered there.
The day that I stumbled upon the Myositis.org website was a day that changed my life. I no longer felt alone in my fight. The first Myositis newsletter they sent me featured multiple pages on the swallowing difficulties faced by Myositis patients. I almost laughed out loud, but instead I sat down, and cried in relief. Someone finally understood me.
I knew then that I wasn't crazy. I was just misunderstood. The medical community was looking at my illness in terms of black and white, yet Myositis often lies in the grey areas, where a number of inflammatory illnesses overlap one another.
After a severe bout of raynaud's syndrome the specialist I was seeing wrote out on my discharge paper that people with JO1 antibodies often suffer from antisynthetase syndrome. This is an overlap of polyarthritis, interstitial lung disease, severe raynaud's syndrome, mechanics hands, and polyarthritis.
Most individuals who suffer from Myositis look normal although they may in actually be very ill. Joint and muscle pain, fatigue, brain fog, difficulty breathing, difficulty swallowing, skin lesions, and muscle weakness are just a few of the symptoms that people with Myositis experience. Unless you see a cane, braces, or a wheelchair that is used when this person cannot walk, then you may not know that this individual has Myositis.
Greater awareness of this rare illness can bring better understanding for those who suffer from Myositis. It can mean increased funding, leading to increased research, and it can also possibly mean an earlier or more accurate diagnosis of Myositis by the physicians and specialists who treat us.
Having September 21st designated as National Myositis Awareness Day is very important to those who suffer from it's symptoms. It is hope that one day there will be a greater awareness of this often very misunderstood illness.
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