Chronic Illness Challenge Day 15

What Would I Say To The Newly Diagnosed

I’m not entirely sure what I would say to someone who has just been diagnosed with EDS because I haven’t been diagnosed for very long myself. Honestly I’m kind of waiting for someone to share some words of wisdom with me. But I guess I would start by saying the obvious: Don’t give up hope. I know EDS symptoms vary widely among people so it depends on the person and how sick they are. But no matter if you’re really sick or really stable, never give up hope. Hope is the one thing that we have that will help us stay strong in this fight.

Also if you are particularly flexible in a certain limb and it causes you a lot of pain, please invest in a good brace. I would also recommend that you see a surgeon to evaluate you and help you pick out the right kind of brace. And I also want to tell you that insurance will cover a decent sized chunk of or the price of the brace because they’re durable medical equipment.

Though I can’t tell you how much the insurance would’ve covered of my silver ring splints. I didn’t want to fight with the insurance to see if they would even cover them to begin with. But according to my hand therapist some insurance companies do cover the silver ring splints and others don’t. Some insurance companies also cover the whole cost of a custom fabricated splint but those are still often bulky and bothersome. But if you have gone and seen a doctor and they have prescribed you silver ring splints you should call your insurance company before your fitting appointment. Try not to be scared off by the price. I know they are extremely expensive but they are absolutely worth it. My thumb pain is almost nonexistent when I wear them.

As for my knee brace they did go through the insurance and I think that the insurance covered all of the cost because I haven’t gotten a bill yet and it’s been awhile since I got them. My knee braces are the Donjoy Reaction web knee braces. They help keep my kneecap in places so my legs don’t give out at random. And while they aren’t the most comfortable things to wear they help me walk better.


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