Sprengles Disorder - Rare Disorders Message Board

kateyes1976 · 09-16-2003, 04:59 PM

I am 26 year old female who has Sprengles, fused vertabrate, which fused themselves , used to be chips of bone.. I have a bulging disk in my thoracic spine, and lower back,degenerative disk disease, at about a 50 year old age level.. Scoliosis, deformed ribs on left side, which is side deformity is located, and ribs also cause chest pain, I feel i suffer from chronic pain. it comes a nd goes,, have had a hard time seeking and finding medical help, always told something else or its going to get worse, was recently told,I may have arthritis on left side. I am desperate for anyone with answers, I am also applying for disibilty right now, i have trouble physically trying to work,, have range of mobility in left shoulder. so any one with advice please help. I have had 2 healthy children w/ no pain meds during labor.. now I feel like my spine could snap somdays.. the muscle spasms are diffucult also,, and being passed from doc to doc, cus my condition is rare, gets me no where but asking more questions,,please help

zuzu8 · 09-17-2003, 08:08 PM

Sprengel's is indeed rare and you really need to find a physician who deals with this disorder...not just any old orthopedist etc.
Here is a link to NORD (National Org. of Rare Disorders)...with some info on where you might turn for some answers: [url="http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sprengel %20Deformity"]http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sprengel %20Deformity [/url]

They give you two contacts...the NIH may be very helpful.

Hope this helps in some way.

zuzu xx

[This message has been edited by zuzu8 (edited 09-17-2003).]

kateyes1976 · 09-18-2003, 02:48 PM

thank you very much.. I have already contacted NORD, and they did send me some info, which is basic facts about the disorder, and that surgery at a young age, for cosmetic purposes is needed if condition is bad. I had the surgery at 2, but my main searh is for info on how the condition affects you as you age, since I feel I am going thru quiet a rough time. As a child , I never had any follow up appointments, to monitor me. I never tryed to protect my back, and I know have injured myself alot. I wasnt very athletic, but I was a typicall youth, neglectful of my body, which everyone has to pay for. but somtimes I feel if I knew more, I would have been more cautious, but I was literally left in the dark> So now as a adult I am searching. I live in Fairbanks Ak, and wouldnt know the first place to go for my condition.I know I well have to search, and maybe travel. But the pain can be unbearable, and finding a Doctor that is willing to investigate, or is knowledgable enough to tell me something, or even refer me to some one who knows is hard is such a small town. thank you for help and time. god bless!

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