Cystic Fibrous Dysplasia

[AmySLE]

I am a regular member of these boards however, I spend most of my time here in the Lupus section as that is what I have been dx. with. My question is have any of you ever heard of this particular disease my sister was dx. with this as a young child and now as a grown woman of 32 it appears that it has returned. Since her original dx. was so many years ago and we were both very young we do not have a lot of knowledge of what this is... Over the years since she has encountered many additional health problems and the little info we have found indicates that this may be the original cause. Any info or suggestions would be very appreciated.

Thank you,

Amy
Detroit,MI

[annemv]

Yes Amy,
I have had the same problem. Diagnosed with FD at young age,then just went on with no problems. Then I turned 30 and things really went down hill.
I am trying to figure it all out.
I now have a huge kidney stone, pituitary tumour (wacked hormones), osteoporosis starting, hypoglycemia.....
I know that this is all related but it is virtually impossible to find a dr who knows how to figure any of this out.
What kind of problems is your sister having?

[hrtofluv]

Hi Amy! Welcome to the bone boards.
There are several posts throughout this board discussing Fibrous Dysplasia.
I have been through a clinical trial at NIH for this disease and was diagnosed with a different more rare disease, but with similar issues of bone pain, swelling, and breakage.
There are more doctors out there than you think, but you have to search for them. Several knowledgeable people here on this board.
Post questions or have your sis start posting - it might make her feel better to know there are others out here with the same problems.

One crucial element is she needs to have a full endocrine workup. Gland issues (thyroid, parathyroid, and pituitary, etc) are very common with this bone disease.
Hope to hear back from you or your sis soon!
hrtofluv

[stine]

Hi hrtofluv,

I am 31 and getting a tonsillectomy next month. (Scared to death!) I just saw your post on the tonsillectomy site and thought I'd ask you a couple of questions. First, do you know what type of procedure they used on you? (Cauterization, laser, dissection, or coblation?) Second, what did your pain feel like? (a really bad thoat infection, burning, throbbing, etc.) I am just trying to prepare myself here... Also, was it tolerable with the pain meds?

Sorry for so many questions- I am asking everyone and anyone at this point.

Thank you, Christine

[AmySLE]

Thank you for your info. My sister has diabetes and Hosimoto's both of which affect the endocrine system these are things that we have known for a while now my biggest concern at this point is that she is having ploblems with the same leg that this originally started in her right foot is not getting proper circulation, is swollen and it hurts to walk on that leg. About six months ago she had some x-rays done and they showed a few small spots in the bone that appeared to be black and look like they are filled with soap bubbles. Is there any treatment out there for this that can help to control the progression before it gets worse? As a child she underwent surgery to remove the one cyst that had destroyed a large portion of bone in her lower right leg and then a series of bone grafts to replace it. This was done through the shriners hospital as my parents were unable to afford her care. Are there any places out there that will help her even though she does not have insurance? I am sorry for all the questions I know it is a pain but please if you can point us in the right direction it would mean the world to both of us.

Thank You,

AMY