So recently my friend and former SG Annisa was recently diagnosed with the same genetic syndrome I was DXed with nearly two years ago. Annisa has been struggling with her own degenerating health while still taking excellent care of her special needs daughter Julianna. Some of you may remember Annisa's posts about her difficult pregnancy and Julianna's own health issues. Annisa has however reached a point, like many of us with Ehlers Danlos Syndrome do, where she needs to fundraise to help cover costs for things like orthopedic bracing and physical therapy. She has asked me to post the link to her fundraiser here for those of you who remember her.
Thank you for taking the time to read and for supporting us.
I know there are a few other SGs with Ehlers Danlos Syndrome as doctors and specialists are becoming more aware of how to accurately diagnose us. I feel that awareness of the syndrome and it's complications were better known, many of us would be diagnosed earlier, receive proper care earlier and end up less disabled and ill as we grow up and age! I KNOW I would be less afflicted had my parents and healthcare providers and schools been aware of the nature of my condition. It is so so important for the public to learn about this uncommon and poorly understood genetic connective tissue disorder. Insurance companies, physical therapists, dentists, nurses, anesthesiologists, GPs and nearly all other doctors and health care providers need to be better educated about this syndrome. I can't speak for the other girls or members here who have EDS but I resent not being diagnosed as a child when I was ill and in the hospital all the time. I am angry I was neglected (out of ignorance and sometimes apathy) by my doctors. I would be more able in every sense of the word now if I had been taken care of properly, so don't let the same happen to anyone else.
