KAP'S PERSONAL STORY

October 14, 2016
Satate : New York 

I am not sure this qualifies for this site but here goes. I am writing on behalf of my young adult daughter. She has NF1 (Neurofibromatosis Type 1), and Plexiform Neurofibromas were recently discovered in 2 sections of her small intestines. They have invaded her intestinal walls. This has affected function and has resulted in malabsorption and iron deficient anemia. We have a Hematologist, Neurologist and Gastroenterologist. We are very happy with them. However, the precise location of the Neorfibromas is so rare that they have not seen it before, and have not been able to locate colleagues who have seen it. We saw an intestinal surgeon this week but the first thing he said was that he knows nothing about NF. We would very much like to find a surgeon who knows about "NF and intestines" so that we can get another opinion on how to proceed. We are in the NY/NJ USA area, but travel is possible.

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