Ehlers-Danlos News

May 28, 2020May 28, 2020

Research Sheds Light on Underlying Mechanisms of Chronic Pain in Classical-like EDS

Ehlers-Danlos News

Lack of the protein tenascin X (TNX) associated with classical-like Ehlers-Danlos syndrome (EDS) promotes higher pain sensitivity to tactile and chemical stimuli and aggravates inflammatory pain, a study in mice shows. These ... Read more

May 21, 2020May 21, 2020

Custom-Made Foot Orthoses Reduce Pain, Improve Mobility in EDS Patients, Study Says

Ehlers-Danlos News

People with Ehlers-Danlos syndrome (EDS) may see improvements in foot pain, foot functionality, mobility, fatigue, and mental health-related quality of life by using custom-made orthotic foot devices, a new study suggests. ... Read more

May 14, 2020May 14, 2020

EDS Society Launches EDS ECHO Nurses Education Program

Ehlers-Danlos News

On International Nurses Day (May 12) the The Ehlers-Danlos Society launched a new education and telementoring program especially for nurses who seek to improve their ability to care for people with ... Read more

May 7, 2020May 7, 2020

Ehlers-Danlos Society Takes Awareness Month Online in May

COVID-19 News, Ehlers-Danlos News

May is Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month. This year, although in-person events have been canceled due to the COVID-19 pandemic, The Ehlers-Danlos Society is challenging the community ... Read more

May 5, 2020May 8, 2020

I’m Trying to Make Lemon Pie

COVID-19 Columns, Ehlers-Danlos News

Like many others, I’ve been forced to accept the current situation as our “new normal” for the foreseeable future. On most days, I get up, take care of the hounds ... Read more

April 29, 2020April 29, 2020

Pregnancy and EDS: What Should I Keep in Mind?

Ehlers-Danlos News

If you have Ehlers-Danlos syndrome (EDS), you likely know that the laxity of your tissues, and other symptoms, could present challenges during pregnancy. If you do decide to conceive, careful ... Read more

April 28, 2020June 1, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

COVID-19 News, Ehlers-Danlos News

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their ... Read more

April 28, 2020May 8, 2020

How I Manage Chronic Pain During a Pandemic

COVID-19 Columns, Ehlers-Danlos News

I’m pretty sure this is the longest I’ve gone without a massage since I learned that they’re critical to my pain management and well-being. Unfortunately, it doesn’t appear that I’ll ... Read more

April 23, 2020April 23, 2020

2 DSE Gene Mutations Newly Identified, Linked to Musculocontractural EDS

Ehlers-Danlos News

Two newly identified mutations in the DSE gene are associated with musculocontractural Ehlers-Danlos syndrome (mcEDS) in three people from two families in Turkey and India. Combined data from this case report and previous ... Read more

April 22, 2020April 22, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Ehlers-Danlos News

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called ... Read more

April 21, 2020April 21, 2020

Finding Positivity in Cooking

Ehlers-Danlos News

As I wrote in a recent column, one upside to all the extra time spent at home is that I’ve gotten to spend more time on activities I really enjoy ... Read more

April 16, 2020April 16, 2020

Newly ID’d Mutation in FKBP14 Gene Linked to Kyphoscoliotic EDS

Ehlers-Danlos News

A newly discovered mutation in the FKBP14 gene results in a misfolded protein that causes kyphoscoliotic Ehlers-Danlos Syndrome (kEDS), a rare subtype of this orphan disease marked by a spinal ... Read more

April 15, 2020April 15, 2020

Menstruating When You Have EDS

Ehlers-Danlos News

Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that affect the connective tissue. The disease is caused by genetic mutations that make the connective tissue weak. This affects ... Read more

April 14, 2020April 14, 2020

Managing Life Without Massage or Pilates

Ehlers-Danlos News

Here in Virginia, all nonessential businesses have been closed for several weeks. Frustratingly, I’m unable to access my two main therapies — massage and Pilates. Both of these activities are ... Read more

April 13, 2020April 13, 2020

Here’s How I Am Coping with the Corona Crisis

Ehlers-Danlos News

Too often while pursuing answers to health questions, people with an Ehlers-Danlos syndrome are told that their physical symptoms must be caused by stress, or perhaps they’re psychosomatic, because no ... Read more