Episode #72: Lara Bloom
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015.
Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert.
Lara regularly works with umbrella organisations lobbying at government level internationally. In addition to her role as President and CEO of The Ehlers-Danlos Society, she is the Global Ambassador for Global Genes.
Before being diagnosed with Ehlers-Danlos syndrome at 24 years old, Lara Bloom endured a diagnostic odyssey. She had spent twelve years with mysterious and painful symptoms (she fractured her wrist something like 27 times), and while she knew her symptoms made her different from everyone else, she spent years without answers. According to Lara, who is now the president and CEO of The Ehlers-Danlos Society, this experience isn’t uncommon. Although there is now growing knowledge about EDS, it’s not a condition that has always been in the spotlight. On today’s episode, Lara and I talk about why she’s dedicated her career to EDS awareness (instead of becoming a spy!) and why it’s important to her that The Ehlers-Danlos Society is in it for the long haul. We also discuss how her life shifted when she stopped waiting for a cure for EDS, and how, although life isn’t what she planned, she’s grateful for every day.
“I stopped waiting for a cure. I stopped waiting for an answer and for a tablet and for a surgery.”
Here are some of the things Lara and I chatted about:
The unexplained symptoms and discomfort that made Lara feel different from all of her peers
The negative experience she had with a surgeon, and what she said to him years later
How disrespect for people’s health realities can have repercussions for their mental health
Finally getting a diagnosis, and her feeling of relief when her experience was validated
Her memory of celebrating her diagnosis and her parents ordering every dessert on the menu
How finally having a diagnosis let her start “decompartmentalizing” all her different symptoms
Deciding to stop going to the doctor all the time, and other ways she shifted her mindset
Going to a conference in the U.S. and meeting people with EDS for the first time in her life
Deciding she needed to find a desk job she loved, and what drew her to the intelligence field
The chance conversation that led to her creating EDS UK while also studying for her degree
Why she was driven to continue to progress awareness, and the people who stay in her mind
How the Ehlers-Danlos Society supports individuals with EDS while also aiming for big impact
EDS Echo, and how it will help people with EDS get diagnosed and cared for more quickly
Why, as someone who is now in the public eye, she has to focus on her own mental health
How she manages her diagnosis (especially with travel), and what her support system is like
The dynamic of feeling like a “burden” in relationships, and how she and her wife navigate that
Our Odyssey, which tackles relationships, sex, and dating with chronic and rare conditions
“You’re living with this for the rest of your life. You need to learn how to dance with it.”
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