Wednesday, December 23, 2009

Antisynthetase Syndrome

I'm still trying to understand my disease. I've been doing some research and thought I would share in case anyone is interested. Also thought I would post some pictures of some of the symptoms of the disease... later I'll post pictures of the side effects of the prednisone! Antisynthetase syndrome is a chronic autoimmune disease of unknown cause. It is a subgroup of the idiopathic (unknown cause) inflammatory muscle diseases and is characterized by myositis, mechanic's hands, interstitial lung disease, arthritis, and Raynaud's phenomenon. What causes antisynthetase syndrome? The cause of antisynthetase syndrome is unknown; however, the production of a group of autoantibodies (antibodies that attack normal cells instead of disease-causing agents) that recognize and attack certain enzymes in the body called 'aminoacyl-tRNA synthetases' appears to be linked to the cause of the syndrome. The amicoacyl-tRNA synthetases are a family of enzymes which play a vital role in protein synthesis in the body. The autoantibody more commonly associated with antisynthetase syndrome is anti-Jo-1. Their exact role in causation of antisynthetase syndrome is not yet known, but viruses have been implicated. The fact that the onset of symptoms of antisynthetase syndrome typically occur during winter provides indirect evidence that infectious agents may play a role. The severity and type of lung involvement typically determines the outcome of the disease. Picture of my fingers experience Raynaud's Phenomenon. This happens quite frequently throughout the day between my fingers and my toes. They turn white, to blue, back to red once they warm up. We figured out last winter that my dad experience's Raynaud's Phenomenon as well. A lot of people do, but they do not know exactly what it is. Some people do not turn all the way to blue, just their fingertips turn white. It's a quite interesting thing... especially when you live in Minnesota like me as it's usually cold! I'm learning to cope with it very well though and as long as I have mittens and heavy socks I'm usually pretty good! Picture of my swollen wrists and feet due to myositis fluid and prednisone fluid! I actually have really small wrists and feet. My finger size at the time of our wedding was 5.5. Now my wedding ring is sized to 7. The fluid retention is crazy.

7 comments:

  1. Thank you so much for sharing just been told they thought i had lupus for years.

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  2. I can't believe how much more information there is on this syndrome. I was diagnosted three years ago this past December. I filled a two inch binder with doctor and blood test results before being diagnosed. Today I am in remission with the help of a wonderful doctor associated with John Hopkins. I take my pills and hope for the best. Thanks for sharing!

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  3. I have a friend that was diagnosed with this syndrome last December and I'm trying to understand her disease. Thanks a lot for sharing this with us.

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  4. hi,
    My mum suffered with Antisynthetase syndrome for many years, she also had Raynaud's Phenomenon and developed C.O.P.D, pluracy and numerous other health problems.
    Having never been a smoker my mum never could understand why or how she had a smokers desease.

    In short - my mum was told that she wouldn't see my fourth birthday, luckly for our family my mum was a fighter and would not accept what the doctors had told her, im now 32.
    Last saturday 30.07.11 at 3am with her husband and children surrounding her my mum decided it was her time.
    She was so strong and we are all so proud of her, she never complained or wanted anybodys pity,she always helped people less fortunate than herself, she just wanted to be and be treated as a normal person.
    I am currently in the proccess of starting up a charity for people with Antisynthetase syndrome and hoping to raise money for more medical research to be done on the desease.
    I wish you all the best and i wanted you to know that no matter how hard life gets at times, you must keep fighting. dont give up, there is apsolutly no reason why you cant have an amazing fun filled life.
    Be strong, be happy in the knowledge that you are loved by the people closest to you and if you can continue to fight this desease there is no reason why you cant have a normal life like my mum has.

    R.i.p mum, i love you with all my heart, god bless xxx

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  5. I too was diagnosed with Antisynthetase Syndrome. I've had it for about four and half years. There's not much I can say that you don't already know. But, I do wish you the best. I do find comfort in the fact that there are others dealing with this disease. (I mean that in a sincere/good sense.) Isn't life the best at giving you the unexpected?

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  6. hello! i just wanted to tell you i feel your pain, my uncle has been diagnosed with antisynthetase syndrome too but its got to do with the hardening of 1 lung, we are also learning little by little about this horrible disease the doctor gave him 3-5 years of life, so we are relly sad. Hope you get better luck forgive me for being so ignorant about his disease. I wish no one could go through this, hope you have better luck!! Always count on God! ok if you know what kinds of doctor treats this disease please email me at locapasion1987@hotmail.com i trying to find hope for my uncle,trying to helping see his kids grow old even when doors seem to be so close for us. God bless! Ill pray for you too!

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  7. My wife has been diagnose with antisyntheatase syndrome today. We are using UPMC in Pittsburgh, PA and are hoping for a 1 year recovery. I will bookmark page and check back. I am interested in the drugs they have you on and will list ours after they are adjusted.

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