Connective Tissue Coalition

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Connective Tissue Coalition Empowering Progress; Inspiring Hope

💙 October is Dysautonomia Awareness MonthFor some people living with Ehlers-Danlos syndromes (EDS), these symptoms may b...
10/08/2026

💙 October is Dysautonomia Awareness Month

For some people living with Ehlers-Danlos syndromes (EDS), these symptoms may be related to a dysfunction of the autonomic nervous system, which helps regulate involuntary functions such as heart rate, blood pressure, digestion and temperature regulation.

One of the most recognized forms of dysautonomia associated with EDS is Postural Orthostatic Tachycardia Syndrome (POTS).

Research increasingly supports an association between the two.

A 2026 systematic review examining 30 studies involving more than 21,000 people with EDS or POTS found that the two conditions frequently co-occur. However, reported prevalence varied substantially among different study populations, and researchers emphasized that more research is needed to understand the relationship and improve care.

Researchers have proposed several possible contributors to orthostatic intolerance in EDS, but the exact mechanisms connecting EDS and dysautonomia are not yet fully understood.

That's an important distinction: An association does not necessarily mean that EDS causes POTS—or that everyone with EDS will develop dysautonomia.

But for people experiencing symptoms, recognizing the connection can be an important step toward asking the right questions and receiving appropriate evaluation. Research in this area can improve care and quality of life.

📚 Sources:
Kwok CS, et al. The co-existence of Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome: A systematic review of the literature.* Autonomic Neuroscience. 2026.

Hakim A, et al. Dysautonomia in the Ehlers-Danlos syndromes and hypermobility spectrum disorders—With a focus on the postural tachycardia syndrome.* American Journal of Medical Genetics Part C. 2021.

Roma M, et al. *Postural tachycardia syndrome and other forms of orthostatic intolerance in Ehlers-Danlos syndrome.* Autonomic Neuroscience. 2018.

💙 OCTOBER IS DISABILITY EMPLOYMENT AWARENESS MONTHFor people living with Ehlers-Danlos syndromes, Marfan syndrome, Loeys...
10/06/2026

💙 OCTOBER IS DISABILITY EMPLOYMENT AWARENESS MONTH

For people living with Ehlers-Danlos syndromes, Marfan syndrome, Loeys-Dietz syndrome, and other connective tissue disorders, having a job can involve challenges coworkers and employers may never see.

Managing pain or fatigue while trying to meet a deadline.

Scheduling work around medical appointments.

Deciding whether to disclose a diagnosis.

Needing flexibility or accommodations—and worrying about how asking for them will be perceived.

Changing careers, reducing hours, or leaving the workforce altogether.

And sometimes, finding an employer who understands that having a disability and having valuable skills can absolutely coexist.

This Disability Employment Awareness Month, we want to hear from you.

💬 FINISH THIS SENTENCE:

“One thing I wish employers and coworkers understood about working with a connective tissue disorder is __________.”

Share your answer in the comments

Your experience can help employers, policymakers, healthcare professionals, and the broader community better understand the realities behind invisible and chronic disabilities.

Your experience matters. Your perspective matters. Your story matters.

💙 Share it with us below

You can’t always see what it’s like to live with a connective tissue disorder—but that doesn’t mean it isn’t real. 💙The ...
08/28/2026

You can’t always see what it’s like to live with a connective tissue disorder—but that doesn’t mean it isn’t real. 💙
The pain. The fatigue. The uncertainty. The endless appointments, medications, adapting, advocating, and planning around what your body may—or may not—allow you to do that day.

For many people living with connective tissue disorders, these challenges are invisible to the outside world. But invisible does not mean insignificant.

To everyone navigating life with a connective tissue disorder:
💙 Your experience is valid.
💙 Your struggles are real.
💙 Your resilience matters.
💙 You are not alone.

At CTC, we believe in creating a community where people are seen, heard, understood, and supported—and where education, advocacy, and research can help create a better future.

Stronger Together. Unseen No More.

"Being a mother is learning about strengths you didn't know you had and dealing with fears you didn't know existed."
08/11/2026

"Being a mother is learning about strengths you didn't know you had and dealing with fears you didn't know existed."

We have teamed up with with Elevate RARE, The Coalition Against Pediatric Pain, Reflex Sympathetic Dystrophy Syndrome As...
08/07/2026

We have teamed up with with Elevate RARE, The Coalition Against Pediatric Pain, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) to understand the experiences of families with rare and genetic diseases as they navigate the health care system. Please share this survey with others who may be interested in participating.

Survey Link: https://elevaterare.org/survey/

Complicated debuted at the Slamdance Film Festival in Los Angeles on February 20, 2025. It now qualified for Academy Awa...
07/31/2026

Complicated debuted at the Slamdance Film Festival in Los Angeles on February 20, 2025. It now qualified for Academy Award consideration for Best Documentary Feature. We were happy to sponsor another showing at the 2026 Ehlers Danlos Society Conference in Dallas Texas.

This film explores the challenges of Ehlers-Danlos syndrome (EDS), medical gaslighting, and false allegations of medical child abuse

Director: Andrew Abrahams, co-produced by CTC board member Donna Sullivan and distributed by Open Eye Pictures.

Where to Watch for Free: You can stream the full movie for free with advertisements on PLEX or on YouTube.

It is also available via the free, ad-supported tier on Roku (available August 14th) and Tubi.

Subscription Streaming: If you have a YouTube TV membership, you can watch it through your active subscription add-ons.

Rent or Purchase: You can rent the documentary digitally for $4.99 USD on the Apple TV Store or $3.99 on Amazon Prime.

Have you seen it?

Qualified for an Academy Award and now available on Amazon Prime, the film can also be ordered for organizations and cla...
07/31/2026

Qualified for an Academy Award and now available on Amazon Prime, the film can also be ordered for organizations and classrooms at complicatedthemovie.com. We're bringing unprecedented visibility to EDS! Let's keep up the momentum🦓

Many people living with connective tissue disorders also experience migraine or recurring headaches, yet these overlappi...
07/25/2026

Many people living with connective tissue disorders also experience migraine or recurring headaches, yet these overlapping experiences are still not well understood.
Kōkūn, a US-based nonprofit focused on invisible conditions, is conducting a global research study to better understand the day-to-day experiences of people living with headache disorders and migraine.
If you experience migraine or recurring headaches, I'd encourage you to participate.
The survey is anonymous, open worldwide and takes about 5 to 10 minutes to complete
Your experiences can help improve our understanding of migraine and its relationship with other invisible conditions.
Take the survey: https://kokun.space/research/headaches/?utm_source=ctc
Please also consider sharing this with others who may be interested.

Help make headache and migraine experiences visible by contributing to the Understanding Headaches and Migraine research, a global initiative by Kōkūn.

07/24/2026

Do you live with hEDS or HSD and chronic pain? We want to hear about your experience.
Pain is common in hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), but a number on a 0–10 pain scale may not fully capture what pain means in everyday life.

Researchers at the University of Arkansas are conducting a study to better understand pain experiences and the impact of pain on daily life among people with hEDS and HSD.
The survey asks about your pain, health and quality of life, daily activities, relationships, work and social participation, healthcare experiences, and emotional responses to living with pain.
You may be eligible if you have a verified diagnosis of hEDS or HSD.

Your experience can help researchers better understand not just how much pain people with hEDS/HSD experience, but what that pain costs them in everyday life.
⏱️ Survey takes approximately 30-45 minutes.
🌎 Must live in the United States and be 18 or older
🔗 https://uark.qualtrics.com/jfe/form/SV_3OcGfG3E3H04Yiq
Please consider participating and sharing this study with the hEDS/HSD community.
University of Arkansas IRB Protocol # 2605676475
Principal Investigator: Dr. Julie Hill at [email protected].

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

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45 Pearl Avenue #3
Winthrop, MA
02152

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Wednesday 10am - 6pm
Thursday 10am - 6pm
Friday 10am - 6pm

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