Dear Ehlers-Danlos Syndrome
Dear Ehlers-Danlos Syndrome, I thought you had me. I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them [...]
The daily realities of Marfan Syndrome
At the beginning of February, I made a vow to write at least one blog post a week in aid of Marfan Syndrome Awareness Month. That has proven to be a very challenging task, but I’m trying. [...]
Finding my voice through Marfan Syndrome
My life with Marfan Syndrome has been incredibly challenging, to say the least. But do you know has been one the amazing things for me? I’m finding my voice through Marfan Syndrome. [...]
Learning you have Marfan Syndrome
When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the doctor was trying to tell me I was about to die. [...]
In Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome
Posted HSD, JHS, hEDS… oh my!
There is so much confusion in our community about hypermobility diagnoses following the release of new criteria in March 2017. Is it HSD, JHS, hEDS… which is it? Here’s a little [...]
What is Marfan Syndrome?
Here at Hypermobility Connect, we like to get behind the awareness days/months that are in place for some of the connective tissue disorders people in our community are living with each day. [...]