Stephanie
Myself (19) and my brother (21) were recently diagnosed with this syndrome. We have both had a lot of medical problems and it is actually a relief to finally know what is causing them. Not that there is a whole lot we can do about it. The diagnosis came a week ago when my brother had surgery on his right eye to fix a detached retina. He had this same surgery 10 years earlier and it left him completely blind in his left eye. We are currently waiting to see whether or not he will be able to see anything at all. Before the sugery, the retinal specialist suggested to my mother that he might have this syndrome. She went home and researched it on the internet. She came across a list of symptoms and it immediately became apparent that both he and I have this disease. The first symptom on the list was loose joints and extreme hyperextentivity, which I was diagnosed with at the age of 6. Next was early onset of osteoarthritis, which my mother, brother, and I are all currently dealing with. Another symptom is hearing loss, which I coincidentally had just discussed with my doctor... whom said it was most likely just ear drum damaged I had suffered during my youth. Upon researching my family history we learned of a severe history of most of the eye promblems that are concurrent with this syndrome. Including: Myself; severe myopia, astigmatism, and floaters. My brother; severe myopia, astigmatism, floaters, detached retina, and cataracts. My mother; severe myopia, astigmatism, floaters, cataracts, and boarder-line glacoma. My grandfather; same as above and blind from untreated glacoma(from age 37) The list of family eye problems goes on and on. My cousin also suffers from MVP and had heart surgery at the age of 16. Other minor symptoms that my brother and I suffer from are dry skin, allergies, and bladder problems. This information about symptoms may help some of you, I know it has helped me. There is a plethera of information about Stickler's on the internet. If anyone has any questions, feel free to email me at fcmindgame@hotmail.com. I only have one question...that is I suffer from chronic tension headaches and I was wondering if this could be yet another symptom caused by the disease. If anyone has any info let me know. THANKS!!