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.
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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