Link: EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem - Dr. Derek Neilson

"EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem" is an informative talk by Dr. Neilson that touches on many important issues related to EDS-HT as well as  presents some very important updates regarding this condition that I have not seen being clarified in any other talk previously.


The video cannot be embedded here due to its privacy settings, so please visit vimeo to play the video.
To view the video on Facebook, click here.
To view his slides along with his talk, click here (only in IE or Firefox, does not play in Chrome) and play from slide#35.

I enumerate here some issues discussed in this talk and some take home points:

Link: Chronic Pain, Cancelled Plans and Friends



Every chronically ill person, especially young people, regularly faces situations where they have to say no to many plans, turn up late for things and cancel on others at the last moment. They regularly face the unpleasant prospect of having to explain these with truths, half-truths and lies, depending on the friend's closeness, receptiveness and capacity to understand the situation. They also lose friends and are often considered weird, especially so if the illness is invisible. This particular aspect among other problems related to social life causes a lot of distress because we also feel disappointed with ourselves, we feel bad for letting down/ annoying others, we feel bad for being misunderstood and we feel lonely.

This is a short article on how friends can show their support and understanding to a chronically ill person when they cancel plans.


What makes a seemingly well person with Joint Hypermobility Syndrome so sick?


"Ehlers-Danlos Syndrome: A Multi-dimensional Disorder" by Dr. Clair A. Francomano

A very informative talk on all the things that go wrong in the body of a person with Joint Hypermobility Syndrome (JHS, aka EDS-HT). A rather comprehensive talk of 37 minutes, but it covers almost all the important things related to this condition. This is a great presentation for anyone wanting to know about this disease. It contains some medical terminology, but is fairly easy to understand in most parts. So many things are wrong in my body that when someone asks, I really don't know where to begin. If you know someone with JHS/ EDS-HT, this talk is a must watch.