In hopes of raising awareness for Ehlers Danlos Syndrome, I will be shaving my head and raising money for EDS. I will be taking pledges and will be donating all the money to The ILC Foundation in Toronto. The ILC Foundation is a Canadian EDS Foundation, they also help people living with chronic pain, and have a research division. Learn about The ILC Foundation here. http://www.theilcfoundation.org.
Ehlers Danlos Syndrome is an inherited connective tissue disorder, it is incurable and something that I live with. EDS means I am lacking the glue in my connective tissue to hold me together. I dislocate my joints regularly, generally daily and nightly. I wear protective braces to help aid in my mobility. EDS isn’t just about joints, it affects my ability to eat, sleep, and function on my own.
I am disabled because of Ehlers Danlos Syndrome. This condition affects many people and causes it’s suffers to feel isolated, trapped, confused and sometimes suicidal due to not being understood. My hope is to help bring about change in any small way I can. Connecting fellow suffers to the resources we need is vital for our care.
Learn more about EDS it’s types and prognosis here http://www.theilcfoundation.org/2017-eds-international-classification/
I will donate all funds to help aid in research and awareness. I’ll be taking pledges now until August 31st. You can mail your donation to me via cheque make it out to “The ILC Foundation.”
You can donate your pledged amount right to The ILC Foundation here. http://www.theilcfoundation.org/donate/ please let me know how much you are pledging so I can share with everyone how much we raise by the 31st of August.
I will video tape my head shave and put it online. Let’s help raise awareness for Ehlers Danlos Syndrome, let’s make a difference for the younger generation affected by Ehlers Danlos, those undiagnosed and those living with the rarer forms of EDS including the deadly vascular EDS.
Thank you so much for your time. Collectively we can bring about change, together we can make this invisible disorder visible. I remain hopeful now and always.
Join me live on instagram August 31 at 3:00pm pacific standard time to see my shave my head. You must be following my instgram to get the notification. Let’s help make a difference together. Can’t afford to donate? Share this blog post and join in the shaving of your head! Tag me and use the following hashtag #ishavedmeheadforeds time for me having hair is ticking away. You matter and your story matters. Never give up or into your illness, and don’t let others treat you like poo.