EDS Awareness!
May is Ehlers-Danlos Syndrome Awareness Month!!!!!!!!!! While every month is awareness month for us, it's especially important when we can rally the troops and make a huge group effort at the same time to get everyone on board.
Ehlers-Danlos Syndrome is an inherited defect in the gene that controls collagen manufacturing. Collagen is the glue that holds our bodies together. Thus meaning, the glue in our bodies is no good and it effects every part of the body that collagen is part of. Which is every part of the human body.
The symptoms are different for everyone, but there are similar patterns. Stretchy, fragile skin. Joints that are hypermobile (what people sometimes incorrectly refer to as "double jointed") and can dislocate easily. Cardiovascular problems including irregularities in regulating blood pressure and heart rate. Pain. Fatigue. Digestive trouble. Neurological issues.
There's not a part of the body that isn't effected. The extremes of the disease are different for every patient, but we all have something that bothers us most.
There is currently no cure for this illness. The exact defect in the genetic code has still not been pinned down, therefore making diagnosis hard and cures impossible. But there's HOPE!!! We always hope that one day, the genetic defect will be pinpointed and corrected and that there will be hope for a future free of pain and trouble related to EDS.
But in order for any of this to happen, everyone needs to know that this strange illness is even out there. As a patient, it's very frustrating when a doctor has never heard of it, thinks it's only a disease that implies super stretchy skin and contortionism, or don't believe you when you think the problems you have are related to your EDS because it doesn't fit into the "normal" definition of the disease.
The fact is, there are many more people out there with this illness than statistics show. But until people know more about it, it's hard to diagnose. Most people with the illness are bounced from doctor to doctor for years with no real answers.
But we have answers now. And we all want to share them so that everybody knows more about this and we can find a way to cure it, prevent this from happening to our children or grandchildren. The next generation shouldn't have to suffer the way we do. Awareness is key.
I'm always happy to answer questions. That's how awareness spreads. In the beginning, it was so hard for me to talk about this freely because it's a rare illness that people haven't heard of, don't understand, probably never will. But now, I realize that I HAVE to talk about this, to say more than just "I have arthritis" or "I have fibromyalgia" (which I do have both, and they are frequently my excuses). I have to let people know that what I have is real. That it's always been real. And that it's real for so many other people in the world who don't have answers yet.
Please ask me anything if it means better understanding this disease yourself. Please don't be afraid to ask me to explain something when I'm being vague or speak in such medical terms that it doesn't make sense. Please help raise awareness for this disease so the next generations don't have to suffer.
Ehlers-Danlos Syndrome is an inherited defect in the gene that controls collagen manufacturing. Collagen is the glue that holds our bodies together. Thus meaning, the glue in our bodies is no good and it effects every part of the body that collagen is part of. Which is every part of the human body.
The symptoms are different for everyone, but there are similar patterns. Stretchy, fragile skin. Joints that are hypermobile (what people sometimes incorrectly refer to as "double jointed") and can dislocate easily. Cardiovascular problems including irregularities in regulating blood pressure and heart rate. Pain. Fatigue. Digestive trouble. Neurological issues.
There's not a part of the body that isn't effected. The extremes of the disease are different for every patient, but we all have something that bothers us most.
There is currently no cure for this illness. The exact defect in the genetic code has still not been pinned down, therefore making diagnosis hard and cures impossible. But there's HOPE!!! We always hope that one day, the genetic defect will be pinpointed and corrected and that there will be hope for a future free of pain and trouble related to EDS.
But in order for any of this to happen, everyone needs to know that this strange illness is even out there. As a patient, it's very frustrating when a doctor has never heard of it, thinks it's only a disease that implies super stretchy skin and contortionism, or don't believe you when you think the problems you have are related to your EDS because it doesn't fit into the "normal" definition of the disease.
The fact is, there are many more people out there with this illness than statistics show. But until people know more about it, it's hard to diagnose. Most people with the illness are bounced from doctor to doctor for years with no real answers.
But we have answers now. And we all want to share them so that everybody knows more about this and we can find a way to cure it, prevent this from happening to our children or grandchildren. The next generation shouldn't have to suffer the way we do. Awareness is key.
I'm always happy to answer questions. That's how awareness spreads. In the beginning, it was so hard for me to talk about this freely because it's a rare illness that people haven't heard of, don't understand, probably never will. But now, I realize that I HAVE to talk about this, to say more than just "I have arthritis" or "I have fibromyalgia" (which I do have both, and they are frequently my excuses). I have to let people know that what I have is real. That it's always been real. And that it's real for so many other people in the world who don't have answers yet.
Please ask me anything if it means better understanding this disease yourself. Please don't be afraid to ask me to explain something when I'm being vague or speak in such medical terms that it doesn't make sense. Please help raise awareness for this disease so the next generations don't have to suffer.