Ehlers-Danlos Syndrome…. Ever hear of it? Well, they say that it’s the most common illness that you’ve never heard of. Jayne Mattingly makes a return appearance and gives Dr. Gaggino an update on her health and life since she was last on the podcast. She will talk about how her condition has progressed and gives an honest account of what life is currently like for her. It’s emotional, it’s raw, and it’s real.
[00:33 -13:39] What is Ehlers-Danlos syndrome (EDS)?
- It is the most common illness that you’ve never heard of.
- There are 14 different types of EDS, the most common being hypermobile EDS.
- It is a genetic condition and is becoming increasingly more common.
- People with EDS may need to use mobility aids and make changes to their living space or lifestyle to accommodate their condition.
[13:40- 24:23] What Impact Has EDS Had on Jayne’s Life?
- She’s now a wheelchair user and has had to move into an accessible home.
- She’s had 14 brain and spine procedures and surgeries.
- She’s had to switch her focus from recovery coaching to training and educating professionals to become eating disorder recovery coaches.
- Jayne created a nonprofit called the AND Initiative which gifts mobility aids and provides resources, education, and advocacy for those with disabilities and chronic illnesses.
[24:24 -32:10] What Are Some of the Difficulties Associated with EDS?
- The world is not as accessible as one might think when one becomes disabled.
- Grief is experienced with the small things, such as getting dressed in the morning or using a shower chair.
- Navigating a world that doesn’t understand can be isolating.
- Loss of independence or having to rely on others for help.
[32:11- 39:09] What Are Some Ways to Support Those with EDS?
- Educate yourself about EDS and learn about its symptoms and treatments.
- Listen and ask questions about how you can help them manage their EDS.
- Offer assistance but when the answer is “no thank you” …. Believe them.
[39:10 – 46:59] Closing segment Takeaway.
***Don’t forget to sign up for Dr. Gaggino’s February 24th Beta Training
for Professionals who want to re-think the mental health services they offer
Up Your Game – Improving Kid’s Mental Health Care
Where to get in touch with Jayne
Instagram: @jaynemattingly
Twitter: @jayneimattingly
Linkedin: jayne mattingly | Search | LinkedIn
Links to resources mentioned on the show
Health Equity for Children and Youth with Special Health Care Needs: A Vision for the Future. https://publications.aap.org/pediatrics/article/149/Supplement%207/e2021056150H/188217/Access-to-Services-for-Children-and-Youth-With?autologincheck=redirected
The AND Initiative: www.theandinitiative.com
Book: Disjointed – Ehlers Danlos Syndrome
Other Pediatric Meltdown episodes you may like:
Episode #62
Eating Disorders: Recovery Coaches Strengthen the Healing Team
Episode #63
Eating Disorders: Feeding Our Kids
Key quotes for Twitter:
“I have really very little independence…the small things are where the grief comes in”…Jayne Mattingly
“The world is really actually not as accessible as you think until you become disabled”.. .Jayne Mattingly
THANK YOU FOR YOUR SUPPORT!
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