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Real members of MyChronicPainTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Is Anyone With Ehlers-Danlos Syndrome Willing To Talk With Me?
A MyChronicPainTeam Member asked a question 💭

I have suspected EDS and am awaiting official diagnosis, but I am coming to find that I feel extremely alone in this as even my partners don't quite understand what I am dealing with. This has been a wonderful community of caring, understanding people, but I would very much like to connect with people who have been diagnosed with or suspect they may have EDS and perhaps learn more about living with it as even regular chronic pain tricks don't always help.

posted August 11, 2019
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A MyChronicPainTeam Member

Leigh'
There is no cure.
Make sure that you avoid lifting weight.
To protect your skin, make sure that you are using the right type of sunscreen.
Make sure to avoid soaps that are harsh and can cause allergic reactions or dry out your skin.
To help minimize the pressure on your joints use assistive devices. There are other recommended treatments. Some say physical therapy helps.
You need to check with your doctor. Good Luck. I hope you receive some responses that can help you.

posted August 12, 2019 (edited)
A MyChronicPainTeam Member

There are actually 13 types of EDS now, and my mother shows heavy signs of it as well as all three of my younger sisters. My brothers do not, but are my father's children and it does not run on their mother's side. I am very aware of the condition itself and what the signa and symptoms are and what it can all lead to, it's more managing it in day-to-day life that I am looking for help with.

posted August 11, 2019
A MyChronicPainTeam Member

I hope that your diagnosis is negative. Good luck. There are four types. It's an inherited genetic medical condition and is caused by a group of genetic disorders. Usually, the parents are the silent carrier of the defective gene and may not show any signs of Ehlers Danlos syndrome. They do not know that they are the carriers of the defective gene that causes Ehlers Danlos syndrome. The baby gets the defective gene from both the parents. The defects weaken the formation and process of collagen. Collagen combines with one-third of all proteins in the body. I hope you do not have it. God Bless

posted August 11, 2019
A MyChronicPainTeam Member

I have Dercum's Disease--does anyone else have it?? How do you treat it?

posted August 11, 2019

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