Imogen's Story

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My daughter Imi (rhymes with Jimmy) has a genetic disorder called Ectodermal Dysplasia. It affects the skin, teeth and nails. For her it has resulted in neuroapthy. She has burning in her feet and at her last visit with the neurologist she showed a little bit of weakness in her pinkeys and the fingers next to them. Both the pain and the weakness are going to slowly progress.

The neuroapthy was not too bad until last year when it kind of roared to life. We ended up taking her out of school and I now home school her. She also goes to a little school for kids who are home schooled. The flare ups of her bad pain (what she calls her lava pain) are controlled nearly 100% right now. She has some discomfort all the time. It gets worse when she sits still, when she gets stressed and often when she's trying to go to sleep.

She sees a pediatric neurologist. She lives normally right now, but I have kept her out of school because I don't know when things might get bad again and I want to have things in place in case they do. I am a college teacher. I teach sociology at a community collge in Richmond, Virginia. My husband is a computer contractor on a military base.

Neuropathy in children is rare and if you have a child with it, I'd love to connect with you. If you have neuroapthy and want to talk, please feel free to contact me for advice (about things to try - we've tried a lot of them) or support.

Katie