Mandy - posted on 04/14/2009 ( 2 moms have responded )
27
20
Would love to hear from other mums that have children with fibrous dysplasia. As it is rare there are very few people with it. My son has it affecting the bones in his face and skull. What if anything has been done for your children?
Sign up for Circle of Moms and be a part of this community! Membership is just one click away.
Join Circle of Moms
Mandy - posted on 04/14/2009
27
20
My son is 9 turning 10 next month. He was diagnosed about 4 year ago. As a result he has facial deformity, moderate hearing loss in both ears and visual problems in one eye (for the time being anyway). I have joined a couple of groups on facebook (Fibrous Dysplasia and Fibrous Dysplasia Awareness) that will give you more info when you find out for sure. Having support from others in a similar situations really does help, and being so rare it is unlikely to find people to talk to face to face about it. Have made friends with a lady in the UK whose daughter has a similar thing (though hers is polystotic fibrous dysplasia, my sons is monostotic fd - which basically means that my sons is contained within the same area and her daughter's is in multiple sites around the body). I live in Australia and she is coming out to visit within the year so the kids can meet. Let me know how the diagnosis pans out. Best wishes, Mandy
Julie - posted on 04/14/2009
15
26
Hi, my son is just turned 1 year and has a preliminary diagnosis of fibrous dysplasia in his right tibia bone. We have spent the past couple days in Minneapolis for tests and a biopsy, we wont know the final result until this Thursday, I read it is a very rare disease, how old is your child?
|
Top Communities |
Topics |
Top Features |
Learn More |
 |
2 Comments
View replies by