My EDS Physical Therapy Helped an Old Injury
I realize that in most of my columns I’ve talked about my injured ankle and knee, as those are the wounds I’ve been having ... Read more
Updates
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European Initiative Targets Diagnosis, Treatment of Rare Diseases
A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while ... Read more -
While Restructuring, Acer Continues Development of Edsivo for vEDS
Acer Therapeutics announced that although it is going through a restructuring process, it stays committed to advancing the development of Edsivo (celiprolol), a potential ... Read more -
I Use Adaptive Aids and Body Mechanics to Complete Household Chores
I need my house to be as uncluttered as possible to prevent injury and to function at my best. Unfortunately, bending over, reaching, grasping, ... Read more -
Missing Pilates Makes a Difference
The past two weeks have been a bit crazy. The owner of the farm where I live had ACL and meniscus reconstruction surgery, so ... Read more
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Ehlers-Danlos Society and Backpack Health Create Digital Platform to Help Patients Manage Their Medical Records
The Ehlers-Danlos Society and Backpack Health have announced a partnership to provide patients with Ehlers-Danlos syndrome ... -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ... -
Marfan Foundation’s Annual Conference to Include vEDS Syndrome
For the first time, The Marfan Foundation’s annual conference will include topics concerning vascular Ehlers-Danlos ... -
Getting a Handle on Hand Pain and Reduced Function Due to EDS
Pain and the reduced function of my hands significantly affect my life. Knowing what ... -
The Good News Continues: Spotty Is Ready for the Next Rehab Step
Last week, I shared a positive update about my new horse, Cherry. A few ... -
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
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Hypermobile EDS Linked to Severe GI Symptoms, Lower Quality of Life, Study Reports
News
Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study. The data also showed that hEDS ... Read more