My name is Noelle, and I was diagnosed with the Systemic Diffuse form of Scleroderma when I was 21 years old. I am currently 26. I also have an underlying disease called Polymyositis, which is inflammation of many muscles. Systemic diffuse scleroderma is rapidly progressing and affects a large area of the skin and one or more internal organs, frequently the kidneys, esophagus, heart, and lungs. This form of scleroderma can be quite disabling.

Scleroderma currently affects about 300,000 people in the United States. Scleroderma means ‘hard-skin broken’ down. It is an overproduction of collagen affecting the skin and underlying tissues. My first onset of symptoms were at 19, which led to a misdiagnose of Lupus. When Scleroderma was finally diagnosed, it had already hit my lungs, heart, and digestive system. We are now trying to prevent it from affecting my kidneys.

For the first year and a half, I did the infusion form of Cytoxan, a chemotherapy drug, that is only experimental. Following that, and since, I have been on an injection form of Methotrexate along with a plethora of other medications.

There is no cure for Scleroderma. It is a chronic, debilitating disease that holds little hope. It is a constant uphill battle that many are fighting. I, for one, feel very blessed every day that I wake up, always hoping that one day there will be a cure.

11 thoughts on “I Was Misdiagnosed With Lupus When In Fact I Was Suffering From Rare Debilitating Disease Called Scleroderma”

  1. Hi Noelle, I also have systemic Scleroderma and polymyositis. I was diagnosed at the age of 27. I am now 64. It has not been an easy road but I had tried to never give up hope. Stay strong and have a positive attitude.

  2. Hollie says:

    Hi, I am 26 and as diagnosed with Morphea when I was 18. It started as a small 50p sized patch on my back, its spread Gradually to cover the entire right side of my back. Until recently I wasn’t taken seriously, and my condition has worsened dramatically over the years. Doctors would not accept my insistence that my condition wasn’t typical of morphea, it isn’t red or purple or rash like, it looks like burns scars – and it goes much much deeper than the skin. I am currently being treated in the royal free hospital in London, I am I methotrexate orally and I have had several pulses of methylprednisolone, doctors think its gradually slowing my condition. But I M unconvinced, and can see it worsening every day. I am now seeing a physiotherapist for chronic back pain, and I now have lesions forming on my face – much more typical of linear scleroderma than morphea. I struggle with the condition every single day, and cry myself to sleep worrying about my future. I’ve never met a girl my age who understands my fears. I would love to talk to you further – I hope we can email 🙂 it was nice reading your post, and I have found some reassurance in discovering I am not completely alone in my plight.

  3. Sasha says:

    Hi Noelle, from my understanding of your disease, it’s an autoimmune disease. I have been battling a losing battle with psoriasis for over ten years and have recently come across a natural solution to my disease. If you like you can look into Dr Pagano’s studies into leaky gut syndrome and how it is an underlying cause of autoimmune diseases. I’m on the road to recovery by eliminating certain foods. Maybe this information can help you. Regards, Sasha

  4. Charlotte says:

    My momma was diagnosed at age 19. She had lots of health problems, but stayed active. Recently passed at 81. Prayers to you. She battled hard, but enjoyed her life.

  5. Annette Acquisto-capozzi says:

    I was 39 I’m now 60 , and happy to be alive. I too, was on the oral form of methyleyrexate, but that was several years ago. I’ve been wondering if I could benefit from taking it again. I too have systemic sclerosis scleroderma with several internal issues. I have chronic pain and take several medications , suffering is the way of life for me. I feel like it continues to worsen, my hands and arms are severely affected. I think it’s time I should look into a more aggressive treatment I realize there is no cure, I just want a little relief. I would like to get some comments from anyone who can relate.

  6. Sofro com a doença e tento entender e será que tem cura ou uma melhora de vida para os portadores.

  7. Araceli Vasquez says:

    My 16 year old grandson was diagnosed with defused on 3/5/15.
    We have no support groups in
    Brownsville TX. HELP!

  8. Araceli Vasquez says:

    It would be a blessing if my grandson Deion had a support group even if on line,because Deion seems to be the only person in Brownsville Tx to be diagnosed with defused scleroderma. Since he is only 16 I would rather forward e-mails that are of benefit to him. My heart goes out to everyone dealing with this horrific disease. I hope our government sends more funding toward a cure. We all need to voice our concerns for our loved ones….

  9. Bisrat Yenealem says:

    I am Bisrat Yenealem and I live in Ethiopia. I was diagnosed with systemic sclerosis when I was 15,I am 19 now .l have been taking oral methotrexate , that the doctors stayed it is decreasing the tightness. but I only see that my skin is getting harder and harder, the thing that seems a heal from burn is covering the hole body, the movability of my joints is decreasing and I am also having back pain. the doctors say I have no internal problems but I think my heart have a problem because I cannot do simple exercises even waking. I do not know if there are other things also,there is always something new on my body. There are limited treatments here I can’t even change the medication,there is no other .This all and the fact that I never get a chance to know some one like me and i can’t work like others to improve my economy worsen my life, I file like i am dead .please I need help!

  10. AC says:

    I believe i’ve been misdiagnosed with SCLE Lupus (only) as well. I was put on anti-malarial drugs which caused my hair to drastically fall out, so I stopped taking them. I have no other symptoms of Lupus. No fatigue, no sun sensitivity. The only symptom i have is vasculitis – inflamation of my blood vessels causing blood spots on my limbs and only my limbs – nothing on my trunk. Is that a symptom of scleroderma? I’ve given up on doctors as they only seem interested in getting me on a drug long term and not actually finding out the cause of my issues.

  11. Is there anyone else dealing with systemic scleroderma in South TX???
    We would sure appreciate hearing from you! Araceli Vasquez

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