The internet can seem like an endless portal that is easy to get lost in. Almost every topic, no matter how rare or obscure, has an article, blog, or website to follow. It can be tricky to determine which resources are trustworthy and which ones are…
June 1 marks the start of Scleroderma Awareness Month, with World Scleroderma Day falling on June 29. This is our opportunity to raise awareness of this rare disease in all of its guises. We can spend the month fundraising for research or raising…
I recently had lunch at the casino with a dear friend. We had planned it for some time, it was in my online diary, and I was really pleased to wake up on the day feeling well enough to go. Lunch was delicious,…
Motherhood is a unique, sacred journey experienced by women from many different walks of life. Some women beat incredible odds to become pregnant. On the other hand, some have to accept the fact that they may never undergo this journey. Individuals with scleroderma are right in the middle…
Living with a systemic, chronic, degenerative disease without a known cause or cure makes for a diary filled with medical appointments. Symptom management alone is a full-time job. I have a strict daily routine in place to minimize the severity of my ongoing symptoms. However, as every…
The body has an organ that helps regulate body temperature, helps the brain feel different sensations, and measures about 20 square feet when stretched out. Our skin is the largest organ of our body, and one of the most important. It keeps harmful germs and microbes out and…
When I became chronically unwell, the last thing I thought I would need was a social calendar. At the time of my diagnosis, I spent many hours resting due to relentless fatigue. I almost deleted the calendar application on my computer. It just didn’t seem feasible…
In a few weeks, the British Society for Rheumatology (BSR) will hold its annual conference. This year, Liverpool is the host city, which is not too far from me in Southport. Sadly, the practicalities of me actually being able to attend, even though the…
Some people go through life miraculously dodging any form of illness or disease. They go to the doctor for their physical once a year and don’t return until the next. Contrarily, a portion of the population spends so much time in a doctor’s office that it starts to…
As a chronically unwell parent, I am aware of the many complicating issues scleroderma has introduced into our family life. I have been especially worried about our son Jack, who was much younger than our two older (and just as wonderful) boys at the time of…
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