Tuesday, November 19, 2013

Profile of the Disfigured Man Hugged by the Pope

Note: the article gets it wrong (at the top).

The name of the condition is neurofibromatosis or NF for short.

My oldest daughter has NF.

So far she only has one growth on her arm. Right now it manifests itself as Cafe-au-lait spots on her body. They look like leopard spots on her neck. She acquired it through random genetic mutation. This happens in 1 in 3000 births.

Not everyone who gets NF gets becomes disfigured. Its expression varies widely.

Medline says that in most adults with NF, the cafe-au-lait spots are the only symptoms.

The fibroma, i.e. lumps, do not necessarily become cancerous. They can be removed surgically, but I suspect in the man's case, there are so many that it would be either difficult or costly.

People with NF can also have cognitive problems.

My hunch is that NF is what is aggravating my daughter's autism.

A large number of people with NF also have autism.