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I have had Sarcoid for many years, more than I thought in fact. When I was 34 years old, I had a baby boy, and when he was just a few weeks old I put on a couple of stones in weight, in about 2 weeks (no one can over-eat by that much) and my hair fell out!
When I was 46, I had 'eye trouble' which was uveitis, then five years after that I landed up in hospital with hypercalcaemia. It was then that I first heard the word SARCOIDOSIS. I of course had never heard of it, and to my surprise, neither had a lot of other people, including nurses! I bought a medical book at that time because it said that most people recover within two years. Although at that time two years seemed like a life-time, as the years went by, two years wasn't really anything. The treatment of course was Steroids, a high dosage when I had a problem, and a lower dosage after the problem subsided. My weight went up, and up, to over six stones overweight at the largest. I have now come down by about 4 stones, and still hoping to go down further. As another problem has appeared, I might have to increase the steroid again, and then the weight will no doubt pile back on. As I couldn't afford to keep buying new clothes all the time, I took to making my own, I called it the D.I.Y Clothing Co. I have many items here with that label in. As I have come down in weight, I can at last wear tailor-made clothes again.
The one thing I did discover, was that keeping busy took my mind off my condition. I also got involved in a self-help group that meets in SE London, and I still help them out today, doing typing and producing Newsletters for them now and again. Being busy is definitely the way to go. And doing something positive is also good. I find that by helping others, you actually help yourself too.
I am now coming up to age 64, and have given up hope of a recovery, but I still have a rewarding life with my family and friends.
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