The skin is the largest organ in the body and is affected in most scleroderma patients.
At the time of my diffuse scleroderma diagnosis in 1997, I had extremely tight skin across my chest, arms, hands, face, legs — all over my body. My hands and fingers were puffy with painful joints and tight, itchy, shiny skin. I was unable to make a fist and could not remove bottle tops or jar lids, plus I had other symptoms like joint pain, gastrointestinal pain, lethargy, and fatigue. My Raynaud’s symptoms developed later.
I was given a 15-month prognosis at the time of my initial diagnosis due to the aggressive progression of the disease.
However, after seven years of chemotherapy and immunosuppressants (I am now 14 years cytotoxic medication-free), I remain in a state of elation after told by Prof. Chris Denton in November 2016 that my skin “is cured from scleroderma.”
I have a daily symptom management routine that includes bathing and moisturizing my skin.
In the last five years or so, I have experienced several skin complications. Most recently, I attended another appointment for my “Bowen’s patch saga,” which opened the “Pandora’s box of scleroderma” at the start of 2018. At my initial referral appointment in January, Dr. Javier Bassas was most concerned that the patch could be melanoma skin cancer, advising me that it could kill me. I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.
I commenced daily application of Efudix cream, a topical chemotherapy, until a week before my follow-up appointment in March. The Efudix cream caused my skin to inflame and break, causing pain and discomfort. However, those symptoms subsided after a few weeks. On the day of my follow-up appointment in March, the skin remained discolored but was now smooth.
Dr. Anthony Downs examined the discolored skin area on my knee and told me, “Your skin cancer has cleared.” I was stunned and overjoyed, and what’s more, there wasn’t a need for biopsy! I then showed Dr. Downs other skin spots for him to confirm as being sunspots. He also found actinic keratosis on my forehead.
Dr. Downs reminded me that the medications used to treat scleroderma heighten the risk of developing skin cancer when combined with sun damage.
During my recent follow-up appointment, Dr. Aamir Memon was concerned that the Bowen’s patch was now presenting as a basal cell carcinoma. The skin is now showing pink-brown patches. I have some new chemotherapy cream to try: imiquimod.
I know that I am a “lucky” scleroderma patient, in the sense that I have minimal internal organ damage and continue to survive, although my full-time job is to look after and respect my symptoms. I remind myself that my job today is to simply to get better, with hope and my canine diva dream team as my constant companions.
Other unmet clinical needs that patients have in common include:
- Gum recession
- Soft tissue and ulcers
- Sclerodactyly hands
- Gastrointestinal issues
For optimal patient care, the following hallmarks preside:
I am honored to be a patient research ambassador with the National Institute for Health Research. Check out this video and my recent addition to their “hall of fame.” Medical research provides immense hope for a #SclerodermaFreeWorld.
Recently, I was appointed a patient public voice for specialized dermatology for the National Health Service England Clinical Reference Group. I am delighted about this role and I very much hope to be a valued voice. That position is in addition to my specialized rheumatology role for the same organization, plus my part in the Committee for Orphan Medicinal Products for the European Medicines Agency.
I’m living the dream, scleroderma style.
Facebook: Raynauds Scleroderma Awareness — Global Patients
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Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.
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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.