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Living with a rare disease brings many challenges, along with becoming an expert on your own medical condition. The rare disease patient’s Holy Grail is to actually receive a diagnosis whereby a treatment care plan then can be put together and, at best, will be focused on symptom…

Loneliness comes in many forms, and for many different reasons, each version being a bleak and forlorn experience. I believe there is a particularly desolate and isolated type of loneliness that those with chronic pain experience every single day. As such,…

For the past week, I’ve had a terrible cold. I’m low-energy, stuffy and cranky, and I can’t get comfortable enough to sleep. In a few days, my cold will hopefully pass and I’ll feel “‘normal” again. Ah, if only my “normal” were really normal. For 32 years,…

Stress and anxiety can be extremely difficult feelings to cope with, especially when dealing with a disease that is literally taking over my body. I feel things happening to my physical self as my scleroderma slowly progresses, and that’s very hard to ignore. I can overthink, creating monsters in my head. At…

Today, to tie in with Autoimmune Disease Awareness Month in March, I am going to focus on musculoskeletal symptoms of the condition. Stiff, inflamed, painful joints and muscles are hallmarks of a range of autoimmune diseases, with arthritis the most prevalent and commonly known, and diffuse scleroderma mimicking it.

There are some very complicated aspects to scleroderma, such as: the myriad of overlapping symptoms and constant side effects, together with secondary conditions created by the many medications I must take. Revolting tests are another thing I must endure. One of the worst has to be…

There isn’t a day that goes by without someone giving me direction. Showing me the way, enlightening me, if you will. Self-created scleroderma experts seem to pop up all over the place with their endless pearls of wisdom, fervently stepping in to save me from my disease.

Have you ever been laid up by an acute episode of pain that is so debilitating all you can do is just lie there, hardly daring to breath for fear of making your agony worse? Living with systemic scleroderma means that unfortunately, acute episodes of…

As March is Autoimmune Disease Awareness Month, today I am going to focus on the autoimmune diseases and discuss the similarities in clinical unmet needs between some of the diagnoses. While it is widely known that an autoimmune disease is one in which the immune response starts to attack healthy tissues,…

I had a friend over for a cuppa and a chat this week, and we found ourselves having a good laugh about events and experiences from our lives. To be honest, it was a lot more than a good laugh. The hilarity reached the stage where we…