Archive for the ‘Community’ Category

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Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association

Posted on July 1, 2015

Trevor Sleeman will be riding his bicycle to raise awareness and funds for the Hypermobility Association. [Halstead Gazette] Trevor will take part in a 100-mile bike ride to raise money for people with a painful medical condition after his wife was diagnosed with it. Trevor Sleeman (pictured), 49, will take part in the Prudential 100 bike […]

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UK woman speaks out about her Ehlers-Danlos Syndrome

Posted on July 1, 2015

Natasha is struggling with walking and needs funding for a wheelchair to cope with her Ehlers-Danlos Syndrome. She helps raise awareness by working for EDS Support UK. Published by: Stephanie Price    A MELIDEN woman who suffers with a rare condition wants to raise awareness as well as raise money to fund an electric wheel chair. Natasha Evans, […]

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Ehlers-Danlos Syndrome May Increase Susceptibility to Infections

Posted on June 25, 2015

People with Ehlers-Danlos Syndrome (EDSers) may have higher risk for infections. Fragile skin and poor healing may lead to skin infections.  EDSers often have a lowered immune system, possibly due to chronic stress on multiple body systems or an IgG-3 deficiency.  By JORAWSTRON People with EDS seem to get more infections than people without EDS, and these infections often […]

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Young Mom Diagnosed with “Rare” Genetic Disorder

Posted on June 22, 2015

Watch this TV news video about Enedina Stanger’s journey to Ehlers-Danlos diagnosis after the birth of her second child. (KUTV) Michael and Enedina Stanger’s love story started shortly after she graduated high school. The two eventually got married and they had 2 kids. After the birth of their second daughter, Enedina’s health started to deteriorate. […]

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Ehlers-Danlos – “An Accident Waiting To Happen”

Posted on June 18, 2015

Philip Howard was the 88th person in Britain to be diagnosed with Ehlers-Danlos syndrome (EDS). He has written a book about his fight to overcome adversity. Philip Howard’s new book “An Accident Waiting To Happen” tells of living with a rare condition that leaves him prone to falling over and breaking bones. Ben Blosse reports. […]

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Soccer Club Supports Teammate With Ehlers-Danlos Syndrome

Posted on June 15, 2015

Watch this TV news video about Madison whose soccer team helps raise awareness for Ehlers-Danlos Syndrome and funds for Cincinnati Children’s Hospital. The SouthStars Soccer Club Team Lightning hosted a bowl-a-thon at Poelking Lanes South in honor of Madison.

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Support For Friends of Hypermobiles/ EDSers

Posted on June 9, 2015

    A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _   If you meet these requirements you can join at www.facebook.com/groups/friends.of.hypermobiles. NOTE: no EDSers will be admitted to the group, it is for support people only so that […]

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Double-jointed? Often in Pain? It Could be Ehlers-Danlos Syndrome!

Posted on June 6, 2015

Ehlers-Danlos Syndrome (EDS) was once thought to be a rare disorder, but EDS experts say its prevalence is under-estimated and its diagnosis is often missed! Learn the signs.   By Abi Jackson _ If you suffer from these ailments, you could have EDS – a rare condition of the joints. Here’s what you need to know. If you don’t know […]

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