I have an opportunity to do 2 things for myself that can really help, but my resources have been impacted by many months of quick declining functioning and all of the medical treatment that goes along with that.
1) Here is my immediate need: In 2 weeks I'm going to be fitted for something called silver ring splints...
...on all of the joints on my fingers. I estimate costs of these semipermanent splints to be around $2000 total. Currently, I dislocate/sublux my fingers if I try to push a button (think keyboard) and these splints prevent those injuries. Since all of my finger joints are impacted, I need 2 per finger at about $100 each. .
2) The second thing I need is to go to the National EDS Conference held in Houston Texas this July 10-12 to learn how to keep the functioning I have left.
Here I will have an opportunity to meet people like me and learn about the new research on this disease. I may even get a free consultation with one of the specialists. As this disease is still considered rare, these people are really the only ones who know much about it. For instance, there are literally no specialists in the Southeast. Period. So I really want to get there. My husband, now my primary caretaker, wants to be there too. If had not exhausted so much on medical bills this year, I wouldn't be reaching out. Any help towards these goals can make a big difference!
Thanks for taking the time to read this! I already feel the love! :-) If you want to watch a video to learn more about the daily life of someone with EDS, I've included a link below.
A video about living with EDS. May is EDS awareness month, so feel free to share.
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