Painful Rare Disease Called Systemic Scleroderma Misdiagnosed By Doctors As Depression


My name is Ann and I was diagnosed with Systemic Scleroderma in June 2009.  Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. Autoimmune disorders occur when the immune system malfunctions and attacks the body’s own tissues and organs. The word “scleroderma” means hard skin in Greek, and the condition is characterized by the buildup of scar tissue (fibrosis) in the skin and other organs. The condition is also called systemic sclerosis because the fibrosis can affect organs other than the skin. Fibrosis is due to the excess production of a tough protein called collagen, which normally strengthens and supports connective tissues throughout the body.

My systemic scleroderma diagnosis came after many doctor’s were complete clueless as to what was afflicting me.  I was told I was “depressed.” I’m a mother of three and at the time this happened I was a sole owner of a pizza shop and my favorite fly fishing, bait and tackle store.

Systemic Scleroderma has literally robbed me of my life.  I’m in so much pain all of the time and I’m incredibly scared because there is not enough information on Scleroderma.  When going to the E.R., some of the doctors don’t even want to see me.

My wish is that friends and family will spread the word and create awareness for this rare disease. I hope for more funding so there is a chance for a cure someday. And last I pray for Scleroderma patients to receive more compassion.

For more information, visit the Scleroderma Foundation.

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Global Genes Comments

  1. Same. I was recently diagnosed with systemic scleroderma. Have had kidney disease for years. Pulmonary hypertension. Severe joint and muscle pain. My stomach got so bad I lost 70 pounds in a year. Doctors gave up and couldn’t find anything wrong besides depression and anxiety. I have up trying. Finally a rheumatologist appointment for me knees led to test then more and so forth. And boom all of a sudden I got my answers. It made me feel justified. I been in and out of hospitals my whole life. I’m not a hypochondriac. I knew something was wrong. No one should be in the condition I was in and here another doctor say he doesn’t know.

  2. Bob edmunds says:

    My sister is Ann she has scleroderma it’s the most painful thing I have ever seen she is brave and courageous noone knows the pain and suffering she endures her family doesn’t treat her as if she is sick at all she looks good and she gets no sympathy people need to realize how much pain goes with the disease and have compassion I could never survive all the pain people love those who are sick with this illness you will be sorry if you do not . This is the most horrible illness ever.my sister is loving and caring and deserves better than this. Love them like there is no tomorrow bob

    • Alison Reynolds says:

      You are an Awesome Brother! I get made fun of All the time told It is all in my head! People are horrible, including Family and especially doctors and nurses. So I just keep on and don’t say a word. But you are correct, it is a horrible, unforgiving, extremely Painful disease and terribly hard on us. We are Warriors! Diagnosed 1980’s

  3. I was diagnosed in 2009 with CREST, the ‘limited’ version of the disorder. LIMITED, my butt! I have lost my job, because employers will not accommodate the disease, thus losing my insurance. I cannot sue, because I am not ‘legally’ disabled. I have applied for disability and been rejected, three times. I would not wish this upon my worst enemy. I live in a small, rural city with limited medical access. The physicians I have seen constantly try and pass me off on someone else because they don’t understand the disease. Marry all this with psoriatic arthritis and Bi-polar and this is my new normal

  4. Pretty much my story exactly. This is a very painful misdiagnosed rare spontaneous disease. Family doctors do not know. People need to be more aware of this so others may not have to go through this hell. In the process of seeing a specialist to get a correct accurate diagnose. Disabling not to mention the severe emotional effects on family and life. Thank you

  5. I am very pained reading this. I unfortunately can relate. I received my positive SCL-70 test result in July of 2014 along with boarder line Sjögren’s just 7 months after my Multiple Sclerosis diagnosis. I felt some of the angst of Scleroderma and Sjögren’s in 2013 and 2014 but my has it become quite the beast in 2015. I thought the spasms and nerve pain from the MS was the worst because I experienced it more but Scleroderma has decided to play catch up in 2015. It’s quite the contender. I just wanted to let you know you’re not alone and I will be sending positive vibrations your way. I’ll send pain free thoughts with love too, I’m sure we can use them. 😌
    I still find smiles as much as I can and remember I’m here to help someone, I may never know who it is but I take peace in knowing my rare overlap might one day save someone else’s life and having 2 children I can only pray if it’s one of them they remember and support someone in some way some day.
    I hope this message greets you with a smile.
    Take care and be love.
    ~Nico

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