Community Voices: 'Living with vEDS' Isabella Marin, RN

[@ericarichardson2983]

I’m always so scared that I’m making too big a deal or worrying too much, plus I don’t want to offend care staff by suggesting possible treatments or tests.
It’s good to hear someone with (v)EDS that is also in healthcare talk about the need for patients to advocate for themselves and inform others.
Thank you for sharing!

[@andethidialbubabibub3261]

Thank you for sharing. I'm very jealous that so many seem to find a diagnosis easy and fast..it took me +100 docs and 10 yrs

[@taliciavanacor9885]

Yep. 20 years here. Not all in my head.... then find out that mom, sister, cousins, and daughter all have it as well. Daughter thinks it isn't real and that I'm crazy. She's noticing symptoms at 24 but explains it away.

[@melissafarrugia9531]

❤ and strength to You
Thanks for sharing

[@BrainSqueezeYT]

Thank you for sharing your story! I think it is so great you've had a parent who pushed hard to get you diagnosed.

[@thewalnutdairy618]

You’re a bad ass, oh and it does suck! But your toughness gives other strength 💯🤛🏽

[@altasmith4572]

God bless you. Thank for sharing and your courage to push forward is inspirational

[@GRP2003]

You are amazing and inspiring Bella. You and your family are always in our prayers ❤️🙏🏻

[@nancyhueber7735]

God bless you, and thanks for sharing!

[@charityholmes4553]

Thank you for sharing your story.

[@taliciavanacor9885]

Thank you for sharing your story!

[@yms4355]

Thank you, zebra strong♡

[@oneandonlyone1]

Each one teach one - we can do this together

[@ServiceDogRosie]

I have vEDS

[@nichole634]

Thank you for sharing your story

[@sheacali5139]

Do you know if it’s true that having one or more pathogenic variants in COL3A1 always results in vEDS?
I am 24 with 4 pathogenic variants according to 23andMe and now I’m terrified. No family history but I have he gene associated with the ultra rare recessive type.

[@TheEhlersDanlosSociety]

Please reach out to our helpline at www.ehlers-danlos.com/eds-helpline/

[@slowlivingmajick]

Thank you for sharing.

[@MrsXx]

Thank you so much for your video. Thank you for sharing your experience. You've helped me massively.

[@spazotk2464]

Wow! Thank you for sharing your story.

[@ServiceDogRosie]

This is crazy near identical to my story

[@pegasus3611]

Thanks for sharing. My wife has vEDS and I know very well how it means.