“I believe in self-advocacy and created a collaborative joint effort with doctors, advocates, and scientists on the edge of research to bring this patient community resource to life,” Cox says.
RICHMOND, Va. (PRWEB)
August 12, 2022
Christie Cox, a patient and advocate who suffers from hypermobile Ehlers Danlos syndrome (EDS), announced today the release of her new book titled Holding It All Together When You’re Hypermobile. Her story sheds light on the plight of many disabled people who turn to crowdsourcing for their healthcare when the medical system doesn’t serve them well.
The new book highlights her 17-year journey to getting a correct diagnosis of a once-thought to be rare disorder that wrecked her life as she knew it. She, like many other chronically ill people, has been forced to turn to online forums and fellow patients instead of trained doctors to learn all they can about their diseases, what Cox terms “crowdsourcing your care.” Medical crowdsourcing sites and apps are gaining momentum and are powered by AI, including patient-focused sites like CrowdMed, StuffThatWorks, and PatientsLikeMe.
Initial response by the patient community has been overwhelming with five star reviews rocketing the Amazon new release to #1 in its category and ranked #3 in the free Kindle downloads of the week!
A long-time EDS medical provider, Dr. Alan Spanos, says, “People with EDS, and certain other conditions, are sidelined or completely ignored by the medical profession. For these conditions, patients themselves have to become the experts, then search for the few educable doctors who will take the time to learn from them and have enough interest in them to want to help them. These doctors are a dwindling population, an endangered species, threatened by extinction due to the nature of our health system: a profit-based industry rather than a community service.”
In her book, Cox outlines why medical researchers now believe at least 1 in every 500 people is afflicted by hypermobile EDS, often going undiagnosed (average time to diagnosis: 12–14 years). The multi-systemic nature of EDS is rooted in a genetic abnormality causing faulty collagen, which is found everywhere in the body and can prove elusive to many medical professionals today. This can complicate connecting the uncorrelated symptoms previously only recognized by hyperextending skin and joints.
Cox explains to patients and their caregivers who are looking for help not only the basics of hypermobility but also its common comorbidities, such as autonomic dysfunction of dysautonomia or POTS (similar to long-COVID) and joint instability, such as craniocervical issues, which happen when your brain drops into your spinal canal and causes mild Chiari. All of these side effects are ones that Cox herself experiences. Her passion project in writing this book has been to collect guidance from other patients and community members to share resources along with suggestions to get diagnosed, potential provider specialists and treatment options, plus lifestyle management tips to enhance quality of life.
“I believe in self-advocacy and was graciously joined by others in this joint effort with doctors, advocates, and scientists on the edge of research to bring this patient community resource to life.” Cox says the result is a powerful guide with insights from medical professionals who understand the disease and advocacy leaders who support research into potential testing, treatment, and hope for a cure. Many patients long for these needed resources that could change the dismissive approach many doctors have to invisible illnesses like EDS. Patients empowered to help other patients.
Cox was joined by the below list of distinguished medical experts, including researchers investigating the disorder at the Medical University of South Carolina (MUSC). Working together, they aim to help make a difference.
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Dr. Sunil Patel, Neurosurgery Chief (MUSC) - Dr. “Chip” Norris, The Norris Lab (researching hypermobile Ehlers Danlos Syndrome (hEDS)), MUSC
- Dr. Cortney Gensemer PhD, Norris Lab (inspiration behind the lab and has hEDS)
- Dr. Amanda Miller, Progress Physical Therapy (specialty in hypermobility)
- Dr. Eric Singman, Former Chief of the Wilmer Eye Institute at Johns Hopkins and Professor of Ophthalmology and Neuro-ophthalmology at the University of Maryland Medical School
Cox was joined by a number of community leaders who worked to get information directly into the hands of patients who were looking for answers.
- Lauren Stiles, Dysautonomia International’s President and Co-Founder
- Lara Bloom, President, The Ehlers Danlos Society
- Dorothy Poppe, President, Bobby Jones Chiari & Syringomyelia Foundation
- Gwenn Herman, Clinical Director, US Pain Foundation
- Trisha Torrey,Founder, The Alliance of Professional Health Advocates
- Camille Schrier, Miss America 2020 (who has EDS)
- Ben Glass, Long-term disability lawyer, Ben Glass Law
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