Chronic Illness

What does it mean to have Jo 1 Antibodies

Chronic Illness
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"What does it mean to have Jo 1 Antibodies"
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Jo-1 antibodies are a marker for people with myositis an illness that is usually referred to as polymyositis or dermatomyositis. Individuals with JO-1 antibodies may suffer from a distinct syndrome called "antisynthetase syndrome". Such individuals are predisposed to dermatomyositis or polymyositis, plus polyarthritis, plus interstitial lung disease, plus Raynaud's Phenomenon, plus mechanics hands, as well as other inflammatory based illnesses.

People with Jo-1 antibodies in addition to their polymyositis or dermatomyostis may also have overlapping symptoms of interstitial lung disease, rheumatoid arthritis, systemic lupus, scleroderma, sjogrens syndrome, Raynaud's as well as other mixed connective tissue diseases. Rather than having one illness that remains steady within us, we suffer numerous symptoms from a variety of inflammatory illnesses, which continuously flow in and out of our life.

Jo1 antibodies are also an indicator for patients who may suffer from an aggressive form of myositis largely due to complications of interstitial lung disease. People with JO-1 antibodies are more likely to suffer from a form of pulmonary involvement known as interstitial lung disease and therefore also require an aggressive initial therapy program to help prevent future complications from this. 

I have JO-1 antibodies and my life has been a constant battle to fight the inflammation, complications, and stigma which comes along with this rare diagnosis.

Jo1 antibodies are extremely rare which means that there is not much information or awareness out there on this illness. When I was first diagnosed with JO1 antibodies there was even less understanding of this extremely rare illness.

Doctors were confused by the disease and tended to place me into one health category or another without realizing that Jo1 antibodies often come with an overlap syndrome. This left me pretty much to fight my battle against this disease on my own.

When I was first diagnosed I was told that I had severe rheumatoid arthritis and that I should not have breathing or swallowing difficulties. That diagnosis was later changed to Polymyositis, then to Antisynthetase syndrome, then to Dermatomyositis depending on which doctor I was visiting at the time.

I was told that I should not be suffering from severe fatigue, or brain fog, and yet I was. It was only much later, and after I had found a support site for my Myositis, that I was to learn that all of these symptoms were indeed genuine symptoms of having Jo1 antibodies.

People with JO-1 antibodies are unique in that we are forced to fight multiple and recurring forms of inflammation on a day to day basis. Yes we suffer from muscle inflammation, but we also may suffer from many other types of arthritis, and have to be treated for each of these in turn.

We learn to recognize our enemies as they come and go, and we develop a battle plan by learning as much about each unique flare up as we are able to, and we are therefore able to minimize the damage done within each of these inflammatory flares.

Knowing our enemy is a key part of how we learn to fight each form of arthritis on its own terms. This is also how we are able to minimize the amount of pain that we are forced to exist in, and how it is possible to survive successfully with JO-1 antibodies.

Luckily there are support groups out there for people who suffer from Jo1 antibodies and Myositis. Please visit the community support forums to talk with others who suffer from this illness. The myositis organization also holds a yearly conference which provides information and support for people with rare muscle myopathies such as Jo1 antibodies.

There are a couple of Facebook support groups which also provide very valuable support for those who suffer from the many forms of myositis. The Myositis Ramblers Keep in Touch Group is an excellent Facebook group for those looking to connect with others who share this same rare illness.

There are also now research programs underway, to help improve the information available to both doctors, and patients of this rare illness. In the United States September 21st has now been dedicated as Myositis Awareness Day.

Understanding and awareness of this rare illness will help to make life easier for those who suffer from this illness in the future. It may also help those afflicted with this illness now to live a longer and less painful life.

Each day our lives are spent making choices that will allow our body to survive in a relatively good enough condition to last an almost normal life span. Most people just take for granted that their body will survive long enough for them to get old, we don't because if we do, then it won't.

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More about this author: Lorelei Cohen

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