EDS Today – Fundraiser

Zebra Strong-header

I’ve set up a fundraising store with several shirt options. Each one sold will have ten dollars donated to EDS Today. If you’d like to order an amazing shirt that helps others click here. 

If you haven’t heard what EDS is, you might have some questions. Or maybe you’ve seen something on the news about it, and have a general idea, but don’t really know what all it effects. If so, I have some questions you might be asking and some answers down below.

“What is EDS?” Ehlers-Danlos Syndrome (EDS for short) is a collection of connective tissue disorders. This means that people who have EDS have problems with their collagen, which is a protein that adds strength and elasticity to connective tissue. This effects the skin, muscles and ligaments. As you can imagine that causes a lot of issues for people with EDS.

“What kind of problems or issues does EDS cause?” There are different types of EDS and it depends upon the type, and severity of it, as to what kind of issues a person will have. Since there are many problems that arise with EDS I won’t list them all, but here are several. Heart valve problems, fragile skin, loose joints, muscle pain and fatigue, easy bruising, fragile blood vessels, highly elastic skin, chronic pain, joint dislocations, and more.

“What causes EDS? Is there a way to prevent it? How is it diagnosed?” Unfortunately, EDS is genetic and that means there isn’t a way to avoid it. Also, it isn’t a common thing to be tested for and doctors don’t often think that it’s the cause of their patients symptoms. In fact, the reason the ZEBRA is the symbol of many EDS charities, and what I use for my fundraiser, is for that very reason. The saying is, “When doctors hear hoofbeats they think horses, not zebras.”

“Is there a cure?” Again, the answer is no. There is no cure for EDS. Doctors can prescribe medicine to help with pain. Physical therapy to rehabilitate join and muscle instability. And perhaps surgery to repair damaged joints. But, another thing doctors consider when contemplating surgery is that some people with EDS will have issues with healing. They could be slow to heal and/or have excessive scarring.

“Has EDS affected you?” Yes, it has. And that is why I have started this fundraiser to donate to EDS Today. Everyone needs to know more about EDS, especially doctors. They need to think outside their box and at least consider those hoofbeats come from a zebra.

One of the reasons I strongly feel that even doctors need more education on this, is because my sister is the one who figured it all out, not her doctors. For years, and years, she had been having so many issues. Migraines everyday. Muscle and joint pain. Odd neurological type problems. And all she ever heard from her doctors was ‘we don’t know what it is… but it isn’t that.’ after one of her many tests and exams. Then one day she was driving home from visiting our grandma and she dislocated a rib. The chiropractor set it back in place, no answers from them on the how of it all. So she did some searching and came across Ehlers-Danlos Syndrome.

She went back to her doctor, explained what she found and they scheduled her an appointment with a geneticist. Finally. An answer. Not a happy one per say, but at least a reason for the pain. At least, a direction to go towards managing the problems that are and will happen. It turns out that both of our parents have EDS. One showing signs of hypermobile and the other as classic. My three sisters and I show symptoms of EDS and we know how important support and education is for this cause.

Thank you for reading my message and I hope this helped at least one of you understand more about EDS. If you’d like to see more about EDS Today please click here. If you’d like to get an awesome shirt that will help out their cause, then please check it out here.

 

 

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