England, United Kingdom
Scleroderma Stories Issue 4
Could you please tell us about your journey?
Elodie Allen is my name. Paris is where I was born and raised. My spouse is English, but I am French. In 2009, we relocated to the United Kingdom. I was 28 years old when I was diagnosed in 2012. In England, I was not diagnosed. I’d had it for around three years before the diagnosis.
Then, I had to return to Paris, where I told the local doctor I grew up with about my symptoms of digital ulcers and acid reflux. He told me I had scleroderma. When I returned to England, I told the physicians, “You haven’t read the symptoms for three years, but a French doctor figured it out!”
After visiting the hospital and undergoing several tests, they confirmed the diagnosis.
Can you describe the symptoms leading up to your diagnosis?
There were three primary issues. First, my fingers become blue due to Raynaud’s disease, and I have digital ulcers that emerge and stay there for months. It’s really painful, and the cold weather aggravates it.
Then, eating caused aches due to acid reflux, but it’s much better now that I’m on GERD medication. The third issue is that my scleroderma has radically transformed some places of my face, the red patches on my face, and how I look.
How did you feel when you were told that you had scleroderma?
I’d never heard of it before, so I had no idea what it meant. But it was a relief since the doctors had told me for three years that I had nothing, yet I could feel myself changing physically. I used to lose my nerve in front of others because I couldn’t play the piano because of my weak fingers. I had read a little about scleroderma, and it was terrible to learn that there is no treatment.
For the 3 years preceding my diagnosis, I felt irritable and exhausted. I was always an active person, but then I started sleeping for long periods of time and convinced myself that I was really lethargic, but it was all due to scleroderma. I wish I had learned about the diagnosis sooner.
What symptom is the hardest to deal with?
The weather and food can both cause significant disruptions in my life. When it’s cold outdoors, my fingers inflate, and I can’t use them. I was terrified that I was going to lose my fingers due to how uncomfortable it was. My digital ulcers have had to be surgically removed.
How has scleroderma impacted your relationships?
People believe that I was always on a diet, but the truth is that I have to eat properly or I’ll have a flare-up. I lost weight before my diagnosis since I didn’t recognize what I had and didn’t eat properly.
I don’t want to go out with anyone because I don’t want people to continuously comment on my skin or the fact that I don’t eat at lunch or wear gloves.
I still lose my patience at work because I wear gloves and people say things like, “Isn’t it an exaggeration because it’s not that cold?” and stuff like that, and I’m thinking, “Well, actually, you don’t know me. You have no idea why.” In the mornings, it’s extremely cold in the UK, so I’m angry and in discomfort.
What are your hobbies?
My physicians constantly warned me that scleroderma might harm my heart, so I avoided strenuous activity. I never wanted to avoid activity because I’ve always been fit, but I still do some mild exercise. When I underwent an operation, there was a possibility that I may lose my hand, so I said screw it and started doing circus arts and sandy clay stuff.
Could you please tell us more about your circus arts experience?
I began with trapeze and then moved on to ropes and swans, which helped me improve my perspective on things. And I fell in love with circus arts; I also obtained certification for training students. I have found a community who has helped me with my skin and my fingers. Because it’s an indoor community, it has always helped with my conditions.
Every time I get a chance, I always go and work out, and that makes me feel better. In addition to my goal of starting to work part-time soon, I want to do as much circus art as possible. My spouse and I are converting our garage into a studio so I can train as I want.
What medications have you tried?
I’d been prescribed a blood thinner, but it also worked as an antidepressant. And since I was taking medication, I got into a vehicle accident on my way to work, so I stopped them. I now only take omeprazole to treat acid reflux.
Everything is covered by national insurance in the UK, which is a big support. We’ve had the NHS since the 1950s, and I have to pay less than ten pounds for medications; the medical system is superior to that of the United States.
Are you in any online scleroderma communities?
What advice do you have for people with scleroderma or other chronic illnesses?
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