Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes

The Spoonie Struggle

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Episode 15: Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes

In this episode, President and CEO of the Ehlers Danlos Society, Lara Bloom shares her story of living with Ehlers Danlos Syndrome. She was diagnosed with EDS at age 24, but was initially misdiagnosed with Marfan’s Syndrome. It took 12 years for her to get formally diagnosed. Even though her presentation was textbook for a connective tissue disorder, she wasn’t taken seriously for a long time. Over time, her presentation of symptoms have changed somewhat, and her doctors are still in the process to see if she has an unknown type of EDS vs hEDS. She noted that diagnosis is crucial to management and care of chronic conditions. She stated that individuals with chronic conditions tend to collect diagnoses, without physicians putting the pieces together.

Her diagnoses include EDS, POTS, MCAS, immune deficiencies, pectus excavatum, PCOS, endometriosis, several muscular and tendon tears, fibroids,

Liver prolapse, Chiari malformation, stretched and hypermobile bladder, SVT, frequent pneumonia, IBS, reflux, bloating, and dysmotility.

She found that her doctors never really listened to her and never tried to figure out what was going on. She even had a doctor tell her that “if you were a dog, we would put you down.” She was seen as a hypochondriac. She often had chest pain and difficulty breathing, but was never taken serious and they never addressed her pectus excavatum. They symptoms were often blamed on anxiety or panic attacks.

She noted that with EDS, there is always so much going on that we don’t always notice everything and we can’t tell what is what. She discusses how important proper movement is in minimizes deconditioning and pain in individuals with EDS. Daily movement and exercise are key for Lara. She speaks to the need to be careful before undergoing surgeries when you have EDS.

Challenges from EDS include hate mail and discrimination and blame from some individuals in the EDS community and people believing she has her own personal agenda in the EDS community.

For treatment, she exercises, does physical therapy exercises, intermittent fasting, hot and cold compresses, high dose vitamin c, b12, and d, and uses hydration. To minimize subluxing during sleep, she uses targeted, focused, and closed-chain exercises.

For her, friends, family, and a supportive partner are key to help with coping with chronic illness. Her goals for the future include traveling with work and meeting people, starting a family. She outlines fears and concerns for the future.

To advocate for yourself, own your narrative. Arm yourself with research. If you feel like you are not being heard, you have the right to a second opinion with a doctor who will listen and validate your concerns.

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