The Importance of Sunscreen for People with EDS
For people with Ehlers-Danlos syndrome (EDS), it’s important to wear sunscreen while outdoors to protect their very fragile skin as overexposure to the sun ... Read more
Updates
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Learning to Manage What I Can’t Understand
Life never seems to slow down. Every time I think I have time to take a breath and catch up around the house (you ... Read more -
5 Tips for EDS Skin Care
Ehlers-Danlos syndrome (EDS) is a rare condition that affects connective tissue, which is important for maintaining skin elasticity and the shape of organs. Many ... Read more -
My Side Road Is Leading Me on New Adventures
So after last week’s frustration, this week was about refocusing and figuring out what my “side road” would look like. I don’t respond well ... Read more -
It All Comes Down to Attitude
Generally speaking, I’m not someone who gets angry. It’s just not my style. I like being productive in all aspects of my life, and ... Read more
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Young hEDS Patients Report Great Number of Physical Symptoms That Affect Their Mental Health
Young people with hypermobile Ehlers-Danlos syndrome have a considerable number of physical symptoms that have ... -
When It Comes to EDS, I’ve Learned to Make Concessions
Things just don’t slow down for me this time of year. Break? What’s that? ... -
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing
Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is ... -
Tips for Schooling with EDS
For parents of children with a rare disease like Ehlers-Danlos syndrome (EDS), managing the ... -
Embracing Structure in My EDS Journey
Ehlers-Danlos syndrome (EDS) is teaching me that I want and need structure in every ...
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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