In this interview on Lara Bloom speaks quite candidly about ehler’s danlos syndrome, including hEDS the hypermobile type. Lara echoes many things that I live with as well, and our fellow Founding Five member Vicky. I was 39 when I got my diagnosis and Vicky in her early 30’s.
All the differing little problems that make our daily lives difficult to plan due to the pain and multimorbidities of EDS.
A positive and inspiring interview giving a loud voice to #EDS and explaining how it affects people but how we have to just go on. Managing our symptoms can be complex at times.
However, Lara went beyond her hEDS to complete the London Marathon which is an amazing acheivement for her and for EDSers. Becoming strong and improving muscle strength can help to improve a lot of the symptoms.
Lara also advocates for research into this invisible and rarely diagnosed condition, asking for research into finding the gene mutation that is the causal factor behind hEDS. Research is key and much needed into this condition that is driving so many people to suicide because of the pain and complicated lives, which causes depression and anxieties.
A brilliant interview!
“Fragile but unbreakable”
Lara Bloom lives in constant pain – but you can see it. She has Ehlers-Danlos Syndrome, a genetic connective tissue condition.
At one point she was self-harming to get attention as she was often called a hypochondriac.
International Executive Director Lara Bloom was interviewed recently by “The Moment-with Maxine Mawhinney” raising awareness about EDS/HDS and talking about her moment when she walked the London Marathon in 2011.