Community Voices: Emma Borreggine

Emma was diagnosed with Vascular Ehlers Danlos Syndrome at the age of 20, after having lost five family members to the disease. In 2014, frustrated by the lack of information and research on VEDS, she and her husband, Justin, founded the DEFY Foundation to help raise awareness and funds to support further research. She has also been involved with the work of the VEDS Collaborative and the VEDS Movement.
Emma shared her story for Community Voices as part of the EDS ECHO Summit Series: Vascular Ehlers-Danlos Syndrome. This two-day event was focused on vascular EDS, and covered:
Genetic and molecular biology of vED
Interpreting genetic testing
Psychosocial issues in patients living with vEDS
Exercise with vEDS
Recordings can be viewed here: www.ehlers-dan...

[@contrarymary76]

May God grant you peace and protection for this disorder. I have never been diagnosed with anything. I'm a mystery to the doctors even after extensive testing. It sucks when they don't take you seriously. I've done my own research on dysautonomia and all its related disorders. It spans such a huge group of symptoms, you can end up sounding like a hypochondriac. Thank you for speaking out and letting others know this is REAL.

[@maureenhughey6500]

I have been diagnosed with Ehlers Type III, Dysautonomia and MPV. My lungs are involved and one has collapsed on more than one occasion.
Thank you for sharing your story. I am very sorry for your loses.

[@kathyw5811]

🙏🙏🙏

[@jenniferrichardson8560]

Thank you for this. All three of my children show signs and symptoms of this terrible disease. I have just been made aware of vEDS. For years we didn’t know what was going on, and now it is becoming clear. We are all about to have the genetic testing. May you have the peace of God everyday of your life.

[@OMaria-qc1kz]

May I ask what symptoms you family is experiencing? I am worried one of my kids has it as we have other forms of EDS on my husbands side of the family.

[@Mjhank]

Lots of love from Spain! Thanks for sharing 🙏

[@magicalpatterns]

I’m waiting for tests results and I’m sooo scare 🙏🏼🦓thank you for this message I needed it.

[@fairwitness7473]

Thank you for this video. This is so important to know!

[@charityholmes4553]

Thank you for sharing your story. I am so sorry to hear of all of your loss. Thank you for sharing the beautiful insights of living life to the full. Praying for you and your family.

[@mannabythemountain1598]

You are such an inspiration to us all! Thank you for sharing your story.💗

[@lisa-marie4938]

You’re amazing ❤

[@marysueroberts285]

This information is interesting to know . Thank you

[@verodrolet4156]

🙏🏻😘

[@KiKiQuiQuiKiKi]

Wait…Vitamin C isn’t the cure???!!¿¡😑
Thank you for sharing your experience. I understand.

[@NaeKid]

Yup. Vitamin C cures everything!!