British Liver Trust
12,446 members6,116 posts

A complex medical phenomenon with a fameliol genetic immune syndrome causing havoc with my body. JFM

The past 9 years has been going to a variety of hospitals in the NHS to check out and diagnose a variety of fameliol conditions.

First the eyes a sudden loss of sight and 8 procedures to put them as best as they can be - cause Unknown. Next stop pericarditis and irregular echo in the heart. A high cholesterol which led to statins and then diabetes 2. Diet became difficult and I became intolerant to food. So I am on a gluten and lactose free diet which has inspired an interest in nutrition. Now I have cirrhosis even though I do not drink alchahol or smoke. I also have GCA which seems to be linked with Diabetes. The worst things are the weakness in my joints and muscles which can leave me unable to find the energy to move. I believe this is a side effect to the steroids and is referred to polymyalgia.

I am still feeling positive and wish to thank the NHS for the care that they are giving to me.

I was born a premature baby at 7 months in the womb in 1953 with my birth cord wrapped tightly around my neck. My entrance into the World was dramatic and I was born a fighter even at 4lbs. I survived! I will survive this inconvenient chapter and see that every dark cloud has a silver lining and I look for fun every day.

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You are such a remarkable person and have do well with so much. Please take care xx

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