Klippel feil in adults chat
i would say with this syndrom try to relax stress isn't helpful and i hope you all feel better!hi evryone thanks for sharing your story i just found out last year i have klippel feil and that i must of had it since i was 18 no one knew why i was in pain they all tought it was in my head the pain is now increassingly worse unbarable the neck sholders middle of my spine back and the lower of my spine back is all bone on bone one chunk and my bone in my lower jaw broke it pretty much a golf ball bone and they other side penny type bone i was born very sick low emune system heart murmur chronic kidney infections and bladder infections my canal in my left ear wasent develop the bone in front of they ea drum and in my right ear im only half deaf im finding out my rip cage and my skull bone where my forehead and eye is changing im on thc pills now cuz no other medication works build emunity to it but sometimes even that dont work im really scared as i dont know the stageg meaning how its all gonna break change and well loose how and also dont know how ill be effected by it in the way of breathing being able to eat and swallow how well i keep my head up or back up the nine yards and scared cuz it can cause organ failure my kidney is allready bad i have one working kidney and its on top of my overys they other kidney where it supose to be near the back but that never work dose klippel feil shorten a persones life and any ideas ??I also understand that this site has alot of doctors, but I fear i am loosing my faith in doctors all together because if a general lack of interest in patents.So being 27 years old and a life long syndrome holder i though i would pass along what i have dealt with and hope it might help some others.
There is an online support group for people with Klippel-Feil Syndrome. Klippel–Feil syndrome is quite rare disease that involves fusion of cervical vertebra that is reason of your symptoms. I have found a few that go into more detail and list associated conditions that the typical ones do not.It also has verying degrees of severity, from mild to missing organs, its compleatly norilogical but affects the whole body.There is no cure since its malformation, and surgery is risky.For years I was given the wrong advice and it started to get me down as it is at times hard to manage.I finally was sent to Stanmore hospital which I was told is one of the best hospitals for people with bone disorders and injuries.