Ehlers Danlos Syndrome

Pennylein · November 2018

I recently found out that I have Ehlers Danlos Syndrome and various spinal problems including scoliosis. I live in London with my husband & 2 retired racing Greyhounds. I’m a proud Oma to my two little grandsons too.

thespiceman · November 2018

Hello @Pennylein Pleased to meet you welcome.

Thank you for joining and sharing.

I am sorry to hear this. I have found on line for you.

The Ehlers Danlos Support UK which is the organisation for the condition you have.

The helpline is 0800 9078 518.

Website https// wwwehlers-danlos.org.

Hope that helps.

We are a supportive, friendly community. Share and care.

Please ask if we can advise on anything. Some one will know.

Please take care

@thespiceman

Ami2301 · November 2018

Hi @Pennylein welcome to the community!

Sam_Alumni · November 2018

Hi @Pennylein
Welcome to the community, some of our members have talked about Ehlers Danlos Syndrome.

@elbest - https://community.scope.org.uk/discussion/46626/how-can-we-be-taken-seriously-with-chronic-pain

@timoglock - https://community.scope.org.uk/discussion/33851/making-our-invisible-visible-ehlers-danlos-syndrome-eds-awareness-month

Ehlers Danlos Syndrome

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