DFW EDS and HSD Support Group

Ehlers-Danlos syndrome patients often have normal labs and physical exam but still feel exhausted, uncomfortable and unwell. Not because nothing’s wrong but because the full picture was never addressed.

To make the most out of visits, Dr. Linda Bluestein, author of The Bendy Bulletin Substack, suggests these ways to most of limited appointment time and advocate for yourself more effectively:
Write down your top 3 concerns in order of priority. Do not wait to see if the clinician gets there naturally.

Track symptoms in advance, including timing, triggers, and patterns. A one-page summary is often more useful than a long verbal explanation.

Bring an updated medication and supplement list with doses.

If your case is complex, ask whether longer appointments are available when scheduling.

State your agenda early. For example: “I have three things I need to cover today.”

Ask for explanations in plain language. It is reasonable to ask: “What does this mean for my daily life?”

Repeat back the plan before leaving. Miscommunication at rushed visits is very common.

Ask specific follow-up questions such as:
“Can we look at the actual numbers, not just whether this is normal?”
“Could this be related to dysautonomia or connective tissue issues?”
“What is the next step if this does not improve?”

Review your full encounter note through the patient portal.

If something remains unresolved, send a concise follow-up message or schedule another visit focused on that concern.
If you felt dismissed or misunderstood, bring it up directly at your next appointment.

What Your Appointment Doesn’t Have Time to Cover (But Should) The overlooked patterns behind fatigue, pain, and dysautonomia in EDS and HSD

The Ehlers-Danlos Society is inviting our community to take part in a series of Listening Labs as part of the development of a new Model of Care for EDS and HSD. The Model of Care is about improving how healthcare systems work in practice, including earlier recognition, clearer referrals, and better coordinated long-term support. It is not a referral program or a recommendation of any specific provider.

These structured virtual sessions are a chance to share your real experiences of seeking care, especially in primary care, where most journeys begin. Your insights will help identify what is not working, what needs to change, and what better care should look like in practice.

Click on the link for more information and how to participate!

https://www.ehlers-danlos.com/listening-labs-model-of-care/

Make Every Move Count for EDS and HSD Awareness!
This May, join The Ehlers-Danlos Society’s biggest virtual Walk and Roll Challenge yet!
Together, we can reduce delays in diagnosis, break down barriers to care, and fund essential education and research. Whether you walk, roll, or move your way, you’re helping shine a light on invisible conditions. Set a goal, share your challenge, and inspire change!

https://www.facebook.com/share/v/18WsymkEGE

May is Ehlers-Danlos Syndrome Awareness Month!

Day 4 – Light It Up Orange

⁠The Light it Up Challenge is an annual May event that asks the community to request their local buildings and monuments be lit up in orange for awareness on May 4.

Another way to shine a light on these conditions is to upload our May Awareness Month profile frames to your social media channels. Wear orange and light up social media!

Get social media frame here: https://www.twibbonize.com/mayawareness262/support

May is EDS Awareness Month! There are currently 13 types of Ehlers-Danlos syndrome, each caused by different genetic mutations. This results in a unique set of features for each type of EDS. Some common symptoms include joint instability, chronic pain, fatigue, immune system dysfunction, GI issues, headaches, and difficulty regulating blood pressure and heart rate. These symptoms fall on a spectrum, so even two people with the same type often have different symptoms. Learn more at on The Ehlers-Danlos Society’s website!
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