Conversation Recap for April 5, 2009

Today looks to be gorgeous outside, it is supposed to get up to 65f.

We started with a story from Candace. The question and answer period was largely about personal things we don’t share on the blog. As a group, the Conversation usually looks for ways to support its participants.

Today Candace gave us a presentation on Ehlers-Danlos syndrome, or EDS, a connective tissue disorder. In EDS the body can not make collagen and put it in the right place correctly. Collagen does a lot of things in the body—it helps make skin supple, it makes blood vessel walls flexible, it makes ligaments and muscles strong, it helps make the membranes on organs strong, and other things. Any and all of these can can affect EDS patients, in degrees ranging from annoying skin problems, to lots of pain, to knees and hips popping out of joint, to fatal organ failures. There is no simple test for EDS. Biopsies to analyze collagen, classification through symptoms, and genetic testing are all used to understand particular patients’ condition (there are eight specific genetic markers for EDS). Accordingly, EDS is underdiagnosed in the population (probably by a factor of ten or more), and if often wrongly diagnosed and treated. And, there isn’t much doctors can do beside “support” patients—orthotics in the shoes, pain relievers, and so on. There is no cure.

You can read more about EDS at the EDS foundation, at http://www.ednf.org/, or at the EDS Network Cares people, at http://www.ehlersdanlosnetwork.org/. They have a particularly detailed description of the variants of the disease at http://www.ehlersdanlosnetwork.org/typesofehlersdanlos.html.

One very difficult family issue with EDS is that the easy bruising is often, according to parents of EDS children, mistaken by school officials as signs of child abuse. So parents have to cope with the Child Protective Services calls, the investigations at school, and more. Similarly, when EDS children are seen by people in the emergency medical system, they are likely to trigger an investigation into child abuse. If children are taken during such investigations and placed into the foster care system, they are very unlikely to be place in households that are knowledgeable about dealing with EDS.

We also had a discussion about how to respond to the situation of a participant in need, and we don’t put that on the blog.