22q11.2 User Group
22q11.2
About This Group:

vcfs..22q11.2..is a genetic syndrome which in itself is rare but with so many many further complications...these include,developemental delay,cardiac problems,learning difficulties,bowel conditions,muscle problems,ear nose and throat..sleep problems.breathing difficulties,..unfortunately..the list is endless..but awareness is priority..

Founded by lisaob1 on June 26, 2012
1 member
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22q11.2

22q11.2 is actually unbelievably more common than initially thought by doctors.. my daughter has a rare syndrome.GOLDBERG AND SHPRINTZEN SYNDROME..of only 15 in the world..i have never found answers through this "syndrome" but she has 22q11.2 also..to which i have found that there are so many people going through the same problems... it is real,it is a concern for thousands..maybe hundreds of thousands of families..all of which were probably labled something else..but all of which have 22q11.2
does your child have developemental delays? speech problems,hearing problems,muscle problems,eye problems.eg ptosis,bowel,heart,bladder,spinal.nasal,neuro,limb spasticity,respiratory,.all of the above and your not getting any answers from consultants and proffesionals alike..always more tests and come back in 3 months...
22q is real.it needs more awareness,.look it up and if you find you are experiencing what im saying then join this..awareness is the key
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