I Have Short Stature Marfan's SyndromeI'm barely 5'2 the height fluctuates between 4'4 to 5'2 , i have a pigeon chest, a hernia heart murmur, scoliosis, spina bifida kyphosis of the spine. I was born with the (hidden) marfans, it happen to show up one yr on an xray. when i was 16. My family knew very well that i had it, but so little was known when i was a child. I have dominent progressive hearing loss, profound deafness is approaching me. I'm very tiny for my age, so keeping the weight off is a must.I have arnold Chiari Malformation ( sack of fluid on the brain) The affects of my conditions are incredibly painful, disfiguring and expensive to treat. Walking is just to painful, swallowing is hard. Breathing and movement are limited. My right leg is turning in more and more every day. I have epilepsy caused by damage to the brain. Had my first stroke at 3 years old, i now have bells palsy, and nerve damage as well a piece of brain matter that can never be repaired. I was the victim of medical malpractice, my body couldn't handle all the stress of surgery to repair a birth defect involving my kidneys. He batched it on purpose. After 7 yrs i won my court case, i was given $ 150.000 at the age of 15. I was born disabled but i'm still here, i've raised 3 kids and they said i'd be vegetable! yes my quality of life is at stake but i beat the odds, i owe my life to the maker, jesus christ. The doctors proclaimed me dead, during my last surgery, the doctor told my parents "God was in this room". White as a sheet he left the room. God had other plans!
peachfuzz68 41-45, F 4 Responses 2 Feb 18, 2012