DIGITAL EXCLUSIVE: Ehlers-Danlos Syndrome Month

Digital Exclusive

May is Mental Health Month, Asian Pacific American Month and Ehlers-Danlos Syndrome Month. You may not have heard of this syndrome, but it’s a rare disease that affect connective tissue. Symptoms can be mild or life-threatening.

“It’s really a connective tissue disorder. We have connective tissue all throughout our body. Collagen is a structural protein . We have about 16 different types of collagen in our bodies. When you have EDS, those collagen proteins, depending on what type of EDS you have, different types of collagen proteins do not work correctly,” said Camille Schrier, Miss America 2020 and suffers from EDS.

There are 13 types of EDS. It can be easily misdiagnosed due to the number of symptoms it may include.

“It’s an invisible illness. For me, I have mostly hypermobile type of symptoms, but it can also range all the way to vascular symptoms because you do have connective tissue in your vascular system,” said Schrier.

“I do have POTS which means my heart doesn’t pump enough blood. So I’m encouraged to have extra salt which is great! I don’t complain about that. I also take salt pills to increase blood volume. Like Camille was saying, it can express itself differently in every individual,” said Caroline Grace Williams, Miss Ohio 2019 and suffers from EDS.

“That stems into something called dysautonomia… and so just the differences of how you’re able to adapt your blood pressure to kind of changing situations. I have symptoms of that, but I don’t have full on POTS which is Postural Orthostatic Tachycardia Syndrome,” said Schrier, who’s also a scientist.

Vascular EDS is life-threatening and should be monitored closely.

“It’s actually sometimes linked posthumously to young athletes that maybe collapse on a field and maybe lose their life and then they find out later that is a result of a vascular EDS,” said Schrier.

Getting the right diagnosis can be difficult, but it can be relieving.

“It brought a lot of peace because you do have these symptoms that don’t really make sense, and these symptoms that are kind of wacky and you’ve had your whole life but you didn’t know why. And then when we were finally able to come to a conclusion, it was kind of a nine month long journey of going to doctors,” said Williams.

Symptoms can vary greatly from discomfort to completely disabling. The treatments depend on the type and severity.

” Mostly causes me joint pains, joint dislocations,” said Schrier.

“(The) Difficult thing about EDS is that there’s not a medicine or type of treatment that one size fits all because it’s expressed differently in everybody,” said Williams.

For more information on EDS and its symptoms, click here.

Copyright 2020 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Events Calendar