Updates

April 16, 2021April 16, 2021
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through ... Read more
April 13, 2021April 8, 2021
Are My Unique Massage Reactions Related to EDS?

I know I write frequently about my massages, but that’s because they are the only treatment available to me, and they keep my pain level ... Read more
April 12, 2021April 12, 2021
Rare Dental Lesions Found in Young Girl with EDS

A young girl diagnosed with Ehlers-Danlos syndrome (EDS) exhibited a rare case of so-called odontogenic keratocysts — benign cystic lesions characterized by aggressive growth — ... Read more
April 9, 2021April 7, 2021
What Playing the Piano Has Taught Me About Living With EDS

The initial pandemic shutdowns last spring brought my family’s very busy schedule to a grinding halt. We decided to use the time to improve our ... Read more
April 6, 2021April 2, 2021
Reducing My Pain Allows Me to Break Through Chronic Fatigue

After almost six weeks of being unable to get a massage because my therapist was injured, I finally got back in last week. I really ... Read more

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

September 12, 2018September 12, 2018

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 patients ... Read more

Updates

EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US

Are My Unique Massage Reactions Related to EDS?

Rare Dental Lesions Found in Young Girl with EDS

What Playing the Piano Has Taught Me About Living With EDS

Reducing My Pain Allows Me to Break Through Chronic Fatigue

EDS-related Gene Variants Found to Play Role in Eye Disorder

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

My Compensatory Pain Can Escalate Quickly With EDS

Healthy Pregnancy, Birth Linked to Genetic Diagnosis of Classic-like EDS

Traditional Orthodontic Retainers Are Insufficient, Thanks to My EDS

Indigestion Common With Joint Hypermobility Syndrome for Reasons Unknown

Subscribe to our mailing list

Sunlight Helps to Ease My Stress and Anxiety

New Mutation Found in Child with Classical Ehlers-Danlos Syndrome

Plastic Surgery for EDS

To Reduce Anxiety, I Remind Myself That Pain and Stress Are Related

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Autism, ADHD May Be More Common in hEDS Children

Your Health Is Not Defined by a Diagnosis

Certain Complications More Common in Hospitalized EDS Patients

Raynaud’s Phenomenon in EDS

5 Small Steps That Have Made My Busy Weeks Easier

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Massage Therapy for EDS

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Staying Warm Is Critical for Maintaining Limber Muscles

High Prescription Rates Show GI Symptoms Are Common, Especially in Teens

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Orthopedic Problems in EDS

A Knee Pillow Provides Me With Pain Relief While Sleeping

New AHEAD Coalition to Address Pediatric Concerns in EDS, HSD

About EDS and Advocacy

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Massage Therapy Helps Manage My Pain, but Insurance Won’t Cover It

Hypermobile EDS Linked to Severe GI Symptoms, Lower Quality of Life, Study Reports