Rare Diseases Community
has anybody ever been told they or someone they love has a unique one o...
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This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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has anybody ever been told they or someone they love has a unique one of a kind disease known?

there is so much information to go into about my daughter,but i was told yesterday by a leading consultant that my 14 year old daughter has complications in this rare syndrome that it could be another syndrome altogether and he actually said should be called MARIA JONES SYNDROME (my daughters name) because not one person on this planet has any of her complications. his words were one in 6 billion. its so hard to comprehend. is anybody else in my position or heard the likes of this?
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selmaS
Allentown, PA