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About Jessiere88

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    Bronze Member

A bit about me:

I was diagnosed with Mixed Connective Tissue Disorder/ CREST (Rheumatologists still like to debate my actual diagnosis, as some believe I have too much skin involvement to be crest while others say I have every symptom of crest, so it's crest) with Juvenile arthritis, Scleroderma and Polymyosiits when I was 15, 2 years after getting sick. I also have Raynaud's as a symptom. I have some internal involvement but so far my lungs and heart have remained untouched, which I am very grateful for. I do, however have restrictive lung disease caused by my skin tightening making my ribs cave in. Due to this I have had 45% lung function for about 5 years.


Last October I got pneumonia and because of my lung restrictions found myself in ICU on a ventilator where I stayed for months. In the end I spent 6 months in hospital.  Before I went into hospital I was studying teaching full time at Uni. I had a year left. The specialists in hospital told me I wouldn't make it out, which, thankfully I did but I now have a tracheostomy tube. I have oxygen at home, and have learned how to suction myself. I have started making hair clips, which I am selling and I am really enjoying that, but I would love to get back to study. I really wanted to work with disabled children, and I am starting to wonder if there is another way I could do that rather than finishing my degree as I don't think I would be up to that in the near future. So that's me.. looking forward to learning about you all. Jess xx


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