This article is dedicated to the memory of Aleksandr Batutenko, a person who was not afraid to declare publicly his rare disease. It was written by Aleksandr Batutenko’s wife Nadezhda, and it is published here with her permission. Aleksandr was a brave young man who lost his life in December 2012 trying to clarify his…
There are times when a Listserv member writes the perfect thing, producing a post which is simply too good to let slide into obscurity. This is one of those posts; Hi “A”, Many of us are on this path – You are at the place signposted, ‘Anger and Frustration’, which is near ‘Death to…
I am not my body! When you have a chronic illness it’s important to cultivate a positive self-image. Even though there may be changes in a person’s capabilities to perform certain tasks it’s important to remember, “I have a body, but I am not my body.” Your body may find itself strong or weak, it…
Submitted by deb on Tue, 07/05/2011 – 15:55 Stories We Tell are e-mail exchanges written by our List members. In this exchange patients discuss the difficulties of see-sawing between between looking fine and lying in a heap somewhere, not always in the place of our own choosing. Imagine walking a 2 x 4 plank spanning the open space…
Submitted by deb on Sat, 08/06/2011 – 23:52 There are times when a member says just the right thing, producing a post which is simply too good to let slide into obscurity. This is one of those posts;— Hi “A”, Many of us are on this path – You are at the place signposted, ‘Anger and Frustration’, near…