At the start of December, I will be celebrating my 20th year since first dragging my “tin-man” body to the Scleroderma Unit at the Royal Free Hospital in London.
The previous year, at the time of my initial diagnosis in September 1997, I was told that I had a 15-month prognosis due to the aggressive attack the diffuse form of the disease was having on my body.
I was also told that there was no cure, and treatments targeted symptom suppression in a “hope for the best” kind of way. The treatments were steroids, chemotherapy, and immunosuppressants.
The year after first hearing those life-changing words, “You have scleroderma,” I took all of the standard treatments in an attempt to suppress disease activity. These medications included hydroxychloroquine, tacrolimus, cyclosporine, methotrexate, prednisolone, omeprazole, amitriptyline, gabapentin, and co-proxamol, among others.
By December 1998, I was in a very bad way. My body was stiff, weak, and in constant, excruciating pain, and my skin was extremely tight.
I then started a new medication regimen that included IV cyclophosphamide infusions, along with mycophenolate mofetil (MMF) tablets.
Thankfully, my name was removed from the stem cell transplant waiting list.
A daily dose of 2 g of MMF for five years stabilized my symptoms. This was stopped in March 2004, upon achieving my personal career goal of being a practicing barrister.
My body is still very weak from the effects of chemotherapy. I am super mindful that I have a weakened immune system in the process of repair. I avoid large crowds so as not to be sneezed or coughed on. Any small bug or virus could knock me out for months.
Thankfully, I no longer have the continual nausea that accompanied my chemotherapy experience. But my GI symptoms are a continual daily demand.
My muscles are still very weak and feel as though I have sprinted around the world. I have constant exhaustion from the most basic tasks, such as simply having a bath. My hair is slowly becoming thicker, but it still comes out en masse. I have more silver-colored hairs!
In November 2016, I was delighted to hear Prof. Chris Denton advise me that my skin is cured of scleroderma. I am eternally grateful to Denton and the National Health Service dream team for keeping me alive.
However, 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.
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 are essential:
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 by the National Health Service England’s 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 at the same organization, and my part at the European Medicines Agency‘s Committee for Orphan Medicinal Products.
I’m living the dream, scleroderma style.
Facebook: Raynauds Scleroderma Awareness — Global Patients
Twitter: @SclerodermaRF and @RaynaudsRf
Google Plus: Raynauds scleroderma awareness global
Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.
One-hundred percent of raised funds will be used for medical research purposes only. Thank you.
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.