first befor i talk about my health i want to explain a bit about Charge syndrome Charge is a genetic syndrome the gene ws discovered only in 2004. Each letter stands for colaboma a hole in the eye Heart problems of any kind such as holes enlarged ventricles artresia of the choanine wiuch is bacaly the area in the nose renal probs gential and grwoth abmormalites and hearing loss. Some people with charge have mishape3n heears facial paralysis and ond other problems such as gut motility and hromonal probs and cleft lip and palate they have that or the artresia i got the cleft lucky me.
My vision is six over sixty my hearing is 70 to 120 defibels i wear a bone conduction hearing aids. From the very start of my life ive had many surgeries mostly on my tummy i have very bad gut motility problems and have often had bouths of tpn and a period of five years on the home tpn.l I had abdominal migrains wich were often realy bad they ended up taking my gall bladder out in 2003 just befor i was eighteen. I have been tube fed all my life got my first tube at eight weeks old i have had many different tubes a gastrostomy a tube into the jejunam central lines went back to gastr4ostomy feeds around 2002 after a very bad central line infection tube feeds was their last hope and i mannaged it again. I also have had many central lines and many tummny surgeries my adult life i have been much healthier
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