Fran Mouser… life after diagnosis with scleroderma
I had been having symptoms of scleroderma since I was 13 years, such as tightening of the skin around my face and hands and stiff joints, but wasn’t diagnosed until I was 18 years. I am now 28 years, have a three year old son and live in Louisiana in the US.
The trigger was when I hurt my wrist. After an X-ray a doctor suggested I could have Buerger’s disease but a dermatologist said scleroderma was more likely and this was confirmed by a skin biopsy.
When I was diagnosed I was confused…. scleroderma was a big fancy word that I didn’t understand. A rheumatologist explained the basics and what I should be prepared to possibly experience. Then we talked in detail about how the scleroderma has affected my lungs. I was so scared.
I was given cyclophosphamide (Cytoxan) and have been on methotrexate, CellCept (mycophenolate mofetil) and other drugs to treat symptoms such as chronic reflux esophagitis, Raynaud’s and dyspnea (severe breathlessness) and the rheumatoid arthritis and generalised anxiety disorder that I also have.
I can’t take strenuous activity because of how the scleroderma has affected my lungs and am struggling with weight gain from some of the drugs. With my anxiety I find myself worrying about things that are beyond my control.
But two years after my diagnosis I married one of my best friends who never left my side. He lifted me up in ways I never thought imaginable. He gave me a reason to want to fight this awful disease that was taking over my body. He made me realise that although I have scleroderma, it doesn’t have me.
Date for your diary: June 29 2015 is World Scleroderma Day, a global campaign to support 2.5 million people diagnosed worldwide. One highlight will be Unveiling Scleroderma, a social media video campaign to show what living with scleroderma is like.
UK support: The Scleroderma Society, visit www.sclerodermauk.org or tel 020 7000 1925
US support: The Scleroderma Foundation, visit www.scleroderma.org or tel (978) 463-5843
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