My son is affected by XLHED but no neuropathy. Have you connected to the NFED organization? Www.nfed.org. Would love to chat with you.
Beth
beth@bcreativecoach.com
Hi, I'm Thomas, 42, from Germany. Thanks for sharing your story. I'm also affected by ectodermal dysplasia. Greetings to Imi, and thumbs up for her.