Tag Archive: HSD

I went through the same diagnostic odyssey as my patients

I have been diagnosed with hypermobility spectrum disorder (HSD) for two years now—and as an experienced genetic counselor, I didn’t know my constellation of symptoms equated to HSD. I am in my early forties, but looking back, my HSD story began in my teens. I developed stretch marks on my thighs and had pain and
View page


My day to day with hEDS

Welcome to a day in the life of hypermobile EDS (hEDS) and its comorbidities. My head starts thumping during my sleep and turns into a sudden ice pick sensation (migraine) 3-9 times a day, and sometimes persists for hours or days. The minute I wake up, I have ringing in my ears, I am dizzy,
View page


Leah sits on her grass lawn

Patient advocacy shouldn’t mean having to fight for diagnosis

Getting an Ehlers-Danlos syndrome diagnosis is an ongoing process that can raise more questions than answers. I had always been ‘flexible’ and had problems with my joints in childhood, but my flexibility was encouraged and any pain was brushed off by doctors as ‘growing pains.’ As a child, I briefly participated in dance and gymnastics
View page


Rhonda's story

I’m a wife, mom, and author

My childhood was a blur of activity. I was, in every sense of the word a tomboy, which for that time period meant a rough and tumble girl. I’m from a small town in Kansas, and my grandparents lived on acreage there. My happiest moments were spent feeding chickens, gathering eggs, caring for horses, picking
View page


Peighton Carter Speaking

My diagnosis has given me a platform to spread awareness

I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic
View page


The Ehlers-Danlos Society Center opens at Indiana University Health

INDIANAPOLIS, USA — The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. A Center for Change The Ehlers-Danlos Society has donated $500,000
View page


Response to British Society for Rheumatology

Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in
View page