May is Ehlers-Danlos Syndrome (EDS) Awareness Month

KY Golfer said:

I've pondered making this post on the forum for over a week now. But I felt if it would help one person, it was well worth it.
This is simply what the title states, an Awareness post.

Almost three years ago now, after probably two years of not knowing what was going on, my Wife was diagnosed with EDS.
We had no idea what it was, what it meant and how we would be affected. She unfortunately was diagnosed with the worst
form and without going into a long rant, I can tell you it not only changed our lives, but consumes our lives. Especially Hers.
She is without a doubt the strongest human being I know. She is my Hero. She fights every single day without a word of why
Me and with the best smile she can put on her face. Of course, I'm biased!! We've decided to try and spread the word about
EDS to as many folks as possible.

The're are people out there right now having issues and can't get a diagnosis from anyone. We speak with many who went years
before they knew what was going on. And like my Wife, finally figured it out thru their own research. I can't tell you how many times
Doctors have told her, "I've never heard of EDS". Still happens today. This is why we need to spread the word.

So what is EDS? I took this directly from the website posted below.

Ehlers-Danlos syndromes are a collection of thirteen multi-systemic, heritable disorders affecting connective tissue, the most abundant
tissues in the body. Common features among the types include:

1. Joint Hypermobility (dislocations, very flexible or double jointed)
2. Skin Fragility (stretchy skin, easy bruising, slow wound healing)
3. Chronic Pain
4. Fatigue.

In layman's terms, the body doesn't produce collagen normally therefore weakening the connective tissues in the body. Things like
tendons and ligaments that hold parts of the body in place, loose joints, and thinner skin. More severe types, such as Vascular EDS,
can be life-threatening, as fragile blood vessels and internal organs can spontaneously rupture.

As of now, there is no cure for EDS. Symptoms, if caught, can be treated and managed.

We are not Doctor's or part of any organization, but if you or someone you know has or may have EDS, please feel free to reach out
to us and we will do our best to help in any way possible. The website below is full of great information, even if you don't know anyone
battling this disorder. We use it a lot.

https://www.ehlers-danlos.com/

Thanks for your time.

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-CRW- said:

My wife is one of those that can't get a diagnosis, but only because our insurance doesn't cover genetic testing.

She had adrenal failure at 23 that they thought was Addison's Disease. Then at 29 she had a stroke from a vertebral artery tear and found out while her adrenal system doesn't work properly it was not Addison's as she did not have the auto-immune markers. She has since developed two herniated disc's in her lower back that will eventually require surgery. The doctors at Baylor Genetics here in Houston believe it is likely EDS or a similar connective tissue disease as it would unify her symptoms. Given the stroke, our concern is a spontaneous abdominal aortic aneurysm at a young age (she's still 34).

Despite taking a large amount of daily medications, you couldn't tell by looking at her that any of this has happened to her. And she works as a registered nurse.

I didn't know this was EDS awareness month, but I'll be sure to let her know.

Click to expand...

KY Golfer said:

I've pondered making this post on the forum for over a week now. But I felt if it would help one person, it was well worth it.
This is simply what the title states, an Awareness post.

Almost three years ago now, after probably two years of not knowing what was going on, my Wife was diagnosed with EDS.
We had no idea what it was, what it meant and how we would be affected. She unfortunately was diagnosed with the worst
form and without going into a long rant, I can tell you it not only changed our lives, but consumes our lives. Especially Hers.
She is without a doubt the strongest human being I know. She is my Hero. She fights every single day without a word of why
Me and with the best smile she can put on her face. Of course, I'm biased!! We've decided to try and spread the word about
EDS to as many folks as possible.

The're are people out there right now having issues and can't get a diagnosis from anyone. We speak with many who went years
before they knew what was going on. And like my Wife, finally figured it out thru their own research. I can't tell you how many times
Doctors have told her, "I've never heard of EDS". Still happens today. This is why we need to spread the word.

So what is EDS? I took this directly from the website posted below.

Ehlers-Danlos syndromes are a collection of thirteen multi-systemic, heritable disorders affecting connective tissue, the most abundant
tissues in the body. Common features among the types include:

1. Joint Hypermobility (dislocations, very flexible or double jointed)
2. Skin Fragility (stretchy skin, easy bruising, slow wound healing)
3. Chronic Pain
4. Fatigue.

In layman's terms, the body doesn't produce collagen normally therefore weakening the connective tissues in the body. Things like
tendons and ligaments that hold parts of the body in place, loose joints, and thinner skin. More severe types, such as Vascular EDS,
can be life-threatening, as fragile blood vessels and internal organs can spontaneously rupture.

As of now, there is no cure for EDS. Symptoms, if caught, can be treated and managed.

We are not Doctor's or part of any organization, but if you or someone you know has or may have EDS, please feel free to reach out
to us and we will do our best to help in any way possible. The website below is full of great information, even if you don't know anyone
battling this disorder. We use it a lot.

https://www.ehlers-danlos.com/

Thanks for your time.

Click to expand...

-CRW- said:

My wife is one of those that can't get a diagnosis, but only because our insurance doesn't cover genetic testing.

She had adrenal failure at 23 that they thought was Addison's Disease. Then at 29 she had a stroke from a vertebral artery tear and found out while her adrenal system doesn't work properly it was not Addison's as she did not have the auto-immune markers. She has since developed two herniated disc's in her lower back that will eventually require surgery. The doctors at Baylor Genetics here in Houston believe it is likely EDS or a similar connective tissue disease as it would unify her symptoms. Given the stroke, our concern is a spontaneous abdominal aortic aneurysm at a young age (she's still 34).

Despite taking a large amount of daily medications, you couldn't tell by looking at her that any of this has happened to her. And she works as a registered nurse.

I didn't know this was EDS awareness month, but I'll be sure to let her know.

Click to expand...

KY Golfer said:

Sorry to hear that CRW but I know exactly what you mean. They are very tough people for sure. Mine just turned 40. She gets all the starring and stuff at the stores because she rides in the chairs. Looks fine on the outside. I’ve almost said some things before but she tells me to let them stare.

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2BFAST said:

Although we are going through very similar if not the exact same struggles, its good to know we aren't they only ones. Some days it seems like no one will listen and she is out on an island with no relief in sight. I will be the first to admit, when it comes to medical terms and such I don't do very well at all. Its something I cant grasp because its all so overwhelming to me. The only thing I can do is help when I can and support when I can. I have been to a few of her doctor visits, and let me tell you one or two of them I think the doctors felt threatened for their life after it was over. I was not happy and made sure they knew it. Simply because they wont listen and since she is very knowledgeable her self because of all the research she has done when she fires back with questions or questions the doctors decision they get irritated and then don't seem to want to help at that point. She has been to Vanderbilt and Mayo clinic and Mayo was a joke. It seemed like Mayo was get in and rush to get you out and didn't really "listen" to her. We were highly banking on that visit and came out more disappointed before she went in because they were supposed to be "the best" and we found out that wasn't the case. The amount of pills over the years that have been prescribed by numerous doctors is simply staggering. "Here, take this. If this doesn't work, take this" "if any of that doesn't work I really don't know" I just don't understand WTF takes to long and why no one can figure this out?

Difficult doesn't even describe it and im not even the one in pain.

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OITW said:

Kudos to you for sharing this, and positive thoughts to you and your wife. Awareness is a huge part in overcoming many things.

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