I Have Short Stature Marfan's Syndrome

I'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 peachfuzz68
41-45, F
4 Responses Feb 18, 2012

Oh my goodness. . What a brave lady. Ive been looking into marfans because of my iwn health and stumbled over your comment. I really think your wonderful. Its such a help to hear that you are taking on everything .. motherhood and just getting on with life even though your suffering everyday. Wow.. hats off to you my dear.. well done.. from jojo in the uk x

i'm 5 ft 3 with marfans it's very annoying and dangerous to me that most med people are under the impression that you have to be tall and if your not you can't have it

I've never been diagnosed but a doctor suggested I might have it. She told me that I should have my aorta scanned yearly because it might be weakened. I have pe with rib flaring, breathing difficulty, and a murmur, along with other structural anomalies. When I was born I had hip displasia and I am double jointed in my hands. Thanks to a brace that came out a year or so before my birth, I can walk. My brother also has a sunken chest but he is 6.3. His pe was present at birth but mine developed in my teen years.<br />
I hope that knowing there are others like you will help. Marfans is an awful syndrome that many people have never even heard of. Remember that God sees your struggles and pain. Throw your burdens on him and he will gladly help you carry them! Job suffered from plight, loss, and plague, many times over and was blessed greatly for not "cursing God". Whenever I am feeling depressed I think about his example and it keeps me going.<br />
You beat the odds, dispite what doctors said. That's great! Your story is an inspiration to me because I have been depressed over this and you give me hope. Thank you.

God IS good! Continue to trust and praise Him during the difficult times and to Thank Him during the easier times. God bless.

Very wise advice, thank you so much!