Unfortunately I am having to have my feeding tube back on 2nd February. I have tried my absolute HARDEST to orally intake nutrition but I am loosing weight again and my bloods show that lots of things are to low and that I am becoming malnourished again. This is a minor set back and I am hoping we can try again without it in a few months time. I really hope that this year sees some development in trying to find which gene causes Ehlers-Danlos type 3 and my hope for the next decade is to have finally found a cure! A lot of people often ask why my doctors dont try this and why that happens to my body etc. These answers cant always be answered. EDS is a multi-systemic condition which means it can affect several organs and bodily functions alongside joints etc. What works for one paitent doesnt work for another. Right now trying to manage the condition and stabilise symptoms is a huge challenge for myself and the medics involved in my care. Tomorrow it is my beautiful nephews 5th birthday and we are having a little party at my house. It was his little sister Gracies 2nd birthday last weekend so she is having a joint party too! They really are such magical children who bring so much pride and joy into everybodys lives! Please keep sharing my page and my YouTube channel to help continue raising awareness of invisible illness :) https://youtube/channel/UCaYwrry5-KlW-pB2YMmgJxg
Posted on: Sat, 17 Jan 2015 21:09:41 +0000
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