027: Lara Bloom, International Executive Director of the Ehlers - Danlos Society
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Lara Bloom is the international Executive Director of the Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. Lara manages coordinated medical collaboration, raising funds for research, and focus on global progression, education, and awareness. From 2013–2015, Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS, and she regularly works with umbrella organizations lobbying in British Parliament. She is a member of the Patient Empowerment Group for Rare Disease UK and the Rare Disease International Patient Advocacy Committee. Before joining the Society, Lara ran EDS UK from 2010-2015. In 2016, she completed expert-level training in medicines research and development, and became a fellow of the European Patients Academy, EUPATI. Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017, and serves on the steering committee of the International Consortium for EDS and Related Disorders.
** Join us as Lara shares… **
- that she was initially believed to have Marfan syndrome – another connective tissue disorder
that there was a major delay in her diagnosis of Ehlers-Danlos with hypermobility
that before her diagnosis, she was prescribed certain surgeries which ultimately did more harm than good – and that she should have had different surgeries that were never realized
that EDS’ best friend is muscle strength – and physical therapy is really helpful
the dichotomy of the struggles she experienced with regard to her sexuality and disability as a teenager – and how tough it was to live with chronic pain from EDS while coming out
The Ehlers-Danlos Society’s Project ECHO®, which aims to streamline diagnosis and treatment protocols for EDS by 2022 and empower medical practitioners with a deeper understanding of the syndrome in order to provide better clinical care – and access to said care
that the international approach of The Ehlers-Danlos Society is really opening pathways to understanding this complex spectrum of disorders – and how this is inspiring not only Lara, but also her colleagues
that there are currently 13 different kinds of EDS recognized, with a 14th in consideration
that The Ehlers-Danlos Society has a global registry for patients to increase understanding of EDS, HSD, and related disorders
that genetic testing is not fully accessible, which perpetuates our lack of functional clinical knowledge with regard to the spectrum of EDS and HSD
the challenges of being in the public eye as a patient who “looks just fine”, works incredibly hard, and advocates so personally for EDS and HSD
how demanding her work is – but that it’s worth it for the strides made forward in EDS advocacy
how chronic illness has impacted her relationships, particularly on a personal level
how a support system can make or break a chronic illness experience
the role of fatigue in chronic illness – and in determined, non-stop advocacy
the importance of positive mindset in symptom management
the need for continued research into EDS
that there is no such thing in the medical world as an EDS specialist
the added challenge of having a disability that’s invisible
why survivors of EDS call themselves Zebras
her vision for the future of EDS diagnosis and treatment This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)