Discussions By Condition: Infant conditions

Mccune-Albright Syndrome

Posted In: Infant conditions 10 Replies
  • Posted By: coloratura8
  • December 18, 2006
  • 08:10 PM

Hi there,

Does anyone out there have a child that has been diagnosed with this disease? If so, are you seeing a specialist for this and in what state?

Also, do you know of any support groups for families that have a child with this disease?

THANK YOU!

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10 Replies:

  • try fdsol.org
    Anonymous 42789 Replies
    • January 22, 2007
    • 09:22 PM
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  • I have a 4 Year old daughter who is in the process of being diagnosed with McCune Albright Syndrome. Right now the only symptom is the cafe-uu-lait spots. She has a big one on her back and a bunch of little ones over the rest of her body. She sees a Genetisist and an Endocronologist. She has had 2 bone scans and tons of blood work and now we are just in the "watch and wait" stage. What symptoms does your child have? What state do you live in? I am in Providence, RI. If you are in the area I would be happy to give you the names if the Dr.s I go to. GOOD LUCK
    Anonymous 42789 Replies
    • August 19, 2007
    • 06:56 PM
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  • I have Mcune Albright SyndromePeriod from 1 year old swellings in my bones and birthmarks back of neck left arm and back buttocks top of right leg.This year I have been recently diagnosed with breast cancer posibly due to continued subjection of oestrogen hormone secreation.Rapid growth in height until the age of 13 years.Problems with bone pain in legs,Bone overgrowth in facial structure. Yearly checks with surgeons for sight and hearing problems which may occur luckily so far everything is normal
    Anonymous 42789 Replies
    • October 26, 2007
    • 09:52 PM
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  • Hi i am seventeen years old and i was diagnosed with McCune Albright at three years old. I have had this disease for fourteen years now. I am looking for other people to communicate with about this disease. I am willing to help other people by answering any questions that I can but also want to talk to others about maybe what medicines and other treatments they have gone through if they have helped or not. any information that anyone can give about this about disease is helpful. i will definately appreciate any advice. thank you, graceless91
    Graceless91 1 Replies Flag this Response
  • Hello, I am willing to answer questions about this disease. I was disganosed with it at age 6 and I am now seventeen. I've been seeing doctors for it as well for the past 11 years.
    Anonymous 42789 Replies Flag this Response
  • Hello, I am willing to answer questions about this disease. I was disganosed with it at age 6 and I am now seventeen. I've been seeing doctors for it as well for the past 11 years.Hi, my daughter is 7 and going through early puberty. She has a birthmark under her armpit and have never heard of MAS. Right now she is going through test and I'm learning about all her symptoms. The birthmark is almost identical to the pictures on the internet. I'm afraid and was hoping you can give some advice or suggestions. She has not been diagnosed with MAS but my gut is saying different. I'm concern, please I need some advice.
    Anonymous 42789 Replies
    • September 12, 2009
    • 00:56 AM
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  • Hi, my daughter is 7 and going through early puberty. She has a birthmark under her armpit and have never heard of MAS. Right now she is going through test and I'm learning about all her symptoms. The birthmark is almost identical to the pictures on the internet. I'm afraid and was hoping you can give some advice or suggestions. She has not been diagnosed with MAS but my gut is saying different. I'm concern, please I need some advice.Hi ! I'm French, 30 years old, and i have been diagnosed with Mc Cune Albright syndrome when i was 2. I am willing to help who i can by telling about my medical history, and i am overall hoping to get some information about medical researches and progresses in the US,in regards to this syndrom. There are several good doctors in France for that disease, but i'm wondering whether research is (or not) going faster in USA. At last, i'm looking for any kind of dialogue with someone my age or older who has Mc Cune Albright syndrome, as i'd like to know more about pregnancy matters. In France, i have been informed about the risks of getting pregnant. I'm about to get married, and my fiance and myself are considering adoption or surrogate mothers, in order to become parents. If any of you has had a child or information about post-pregnancy complications, please reply to this thread. Thanks in advance !
    Anonymous 42789 Replies Flag this Response
  • Hi ! I'm French, 30 years old, and i have been diagnosed with Mc Cune Albright syndrome when i was 2. I am willing to help who i can by telling about my medical history, and i am overall hoping to get some information about medical researches and progresses in the US,in regards to this syndrom. There are several good doctors in France for that disease, but i'm wondering whether research is (or not) going faster in USA. At last, i'm looking for any kind of dialogue with someone my age or older who has Mc Cune Albright syndrome, as i'd like to know more about pregnancy matters. In France, i have been informed about the risks of getting pregnant. I'm about to get married, and my fiance and myself are considering adoption or surrogate mothers, in order to become parents. If any of you has had a child or information about post-pregnancy complications, please reply to this thread. Thanks in advance !Hi My daughter is 14 and was diagnosed at age 7. I was wondering what your history has been like since each case is sort of unique. She has had 2 surgerys on har left femur twice. Hopefully this one will last long. Right now she has a hard time with acne. For a lot of years we slowed down her puberty and now she is old enogh to be in puberty it has been rough. Thank you for your help and I wish you lots of happiness in you marriage ...
    Anonymous 42789 Replies
    • August 27, 2010
    • 04:21 PM
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  • Hi there, Does anyone out there have a child that has been diagnosed with this disease? If so, are you seeing a specialist for this and in what state? Also, do you know of any support groups for families that have a child with this disease? THANK YOU!There is a specialist at NIH in Washington DC who is named Dr. Collins.
    Anonymous 42789 Replies
    • January 22, 2011
    • 05:08 AM
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  • I was diagnosed with McCune-Albright Syndrome with polyostotic fibrous dysplasia 2 years ago. I am currently 17. I love to play sports but the main symptom for me is stress fractures. I have had 4 in the past 2 years.. I love to play sports and this causes complications for me wanting to play sports when I get stress fractures all the time. I have been seeing a bone specialist who has prescribed me to get bone injections through an iv every 3 months of bisphosphonate. I have been getting these injections for 2 years now and I currently have another stress fracture. Its frustraiting because I want to do competitive cheer but, I can't when my leg is slowly breaking. It took me a year to get the proper diagnosis. My symptoms:Period at 10 years old.cafe-au-lait spots on my stomach, left breast, left fore arm, and right knee.Osteocondroma (bone tumor) in my right leg at 11.Stunted growth (4'10" at 17)Multiple stress fracturesLegions in my right tibia, left femur, and behind my left eye.Frequent Migraines from my legion behind my eye.Worse eye sight in my left eye.. very bad eye sight.
    jaymie 1 Replies Flag this Response
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