Reblogging this story about #EhlersDanlos I told a few years ago for #RareDiseaseDay
Ten years ago today, I sat in a small windowless office while a doctor told me that I had something called Ehlers-Danlos Syndrome and I’d probably be dead within five years.
I had no clue what it was or what he’d said. I was so overwhelmed that a friend did the initial researching and sent me links. At the time, there was very little information online. The EDNF had an impenetrable web page, there was no NYC support group, and I was only able to find a few people with livejournals. So I signed up for LJ and started connecting.
It’s so different now, you guys. I’ve met so many Ehlers Danlos patients now that I can pick ‘em out by sight. Twitter, Tumblr, MF’in LJ - We’re EVERYWHERE. We’ve got forums and multiple foundations. It’s kind of awesome. I learn so much every day.
I remember reading that most doctors would be lucky to see one patient with EDS during their entire practice. I’ve been mistreated by more doctors than those who’ve helped. It’s been a good learning experience, but I’m glad it’s getting better. We’re still not there, not by a long shot, but it’s a little better.
May is Ehlers-Danlos Awareness month, which meant fuck-all to me when I started hearing about it, around 2006. It was a stressor on the local groups to try and earn money and gain some local media support for the national foundation. I don’t feel that way about it anymore. When I tell people about EDS and the way it affects my life on a daily basis,my life gets better. It helps other people get diagnosed and treated. When I recommend doctors who have been helpful, they see more EDS patients and end up treating me more effectively. The people around me gain a slightly better understanding of my limitations and prioritize accessibility.
It’s better now than it was 10 years ago, but there’s still a long way to go.
If you want to know more about Ehlers-Danlos Syndrome, start here:
Foundations & Support: EDNF Ehlers Danlos Network Cares EDSNYC 2.0**The people in the NYC group made me feel like I was going to get through this. I cannot stress enough how much in-person support has helped.
If you’re down with reblogging for awareness, go for it. I’ll post other EDS things today and this month, too. Thanks for reading.
Full gear. #ehlersdanlos #ringsplints #silverringsplints
Does anyone know where you can get ring splints???
The joints in my fingers are so weak and floppy that it’s easy to partially dislocate them without really trying, even with doing physio to try and stabilise my range of motion and mobility. Trying out some kind of ring splint really might be a good idea for me, especially on bad days, or months, like this one has been.
Help a spoonie sister out?
I saw a tumblr post a while back advertising this website: http://www.silverringsplint.com/
They’re expensive but supposedly very good.
I got my ring splints by getting a prescription from my rheumatologist, then going to a hand therapist who knew how to both fit me for them properly and also bill my insurance. The splints pictured above were then ordered through silverringsplint.com, who were also great about returning a set of splints that didn’t fit once they arrived. I had to go to a jewelry store and get the wrist chain on my thumb splint cut down to size, which was free. I was extremely lucky, in that my insurance covered them. Part of this was definitely working with someone who knew how to bill them correctly. Insurance companies are pains in the arse.
EDSRINGSPLINTS on Etsy is a great place to get a set of splints, too. You don’t need a prescription to order from them. They recently ran a promotion for rare disease day. Check it out here: https://www.etsy.com/listing/174729672/get-your-rare-disease-day-splint?ref=shop_home_feat_4
If you want to try out splints without the commitment, plastic ones are available on Amazon. Here’s an example: http://www.amazon.com/Oval-Splints-Individual-Ring-Size/dp/B000ITFYV8/
Eds pain scale
So, as you’ve heard me bang on about, I’ve got this thing called Ehlers Danlos Syndrome, and it’s kicking the crap out of me. Pain, constant, often very severe. Fatigue, also constant, also often very severe.
Here are some common misperceptions.
1) With treatment, I’ll “get better”.
So I have a question for my lovelies out there with chronic illnesses (particularly eds). Do you guys use special computer mice? Or keyboards? Because my fingers have been pretty bad lately and I think it’s from being on the computer…
curious about if anyone has answers to this so signal boost…
My hands are messed up, too. I use a full set of ring splints, wrist braces and dragon dictation to get around it.
- Them: what have you been up to?
- Me: trying to digest a carrot I ate yesterday
Heads up. This is asking for Internet participation:
“We wanted to let you know about something important:
Karen Arthur is recruiting participants to a study titled “Pain Control Methods in Use by Patients with Ehlers-Danlos Syndrome and Pain Control Effectiveness.” She is looking for participants who are 18 years old and older and with a diagnosis of Ehlers-Danlos Syndrome of any subtype to complete a survey about EDS diagnosis, pain, pain management, and life satisfaction. By doing this research, Karen hopes to determine patients’ preferences for pain management. Participation in this study is voluntary; participants are free to withdraw at any time or refuse to participate without penalty.
Please go to http://cmhc.appstate.edu/eds for more information “
I had a pair of really stiff high boots that I wore into the ground - they gave some compression and kept my legs from having shooting pain on planes and what not… but of course, they weren’t well made and they’re dying a slow death.
It occurred to me that part of my problem is my knees lock…
Boots are one of my favorite functional fashion items. I’ve got pairs with a little extra give in the ankles to allow for additional bracing, and lace ups to control compression. I also like a wedge to pitch me forward and align my hips, but it hurts my knees. Still looking for the perfect cushioned wedge insole for my flat boots. If you’ve got tips, pass ‘em on.