Meet the Voices

Three unique individuals on how they're making the most of their lives with vEDS.

Back to Voices of vEDS

The optimist: Destiny

“Any time something happened, I always managed to overcome it. And something good came out of the situation. Nothing makes me feel better than helping someone else. I hope that other people with vEDS can take what they’re given and make the most out of it, too.”

Always looking on the bright side

Diagnosed with vEDS at age four, Destiny has been through more than two decades of hardship. She lost her mother to vEDS at a young age, and her father—her main source of strength—recently passed away from cancer. Along with vEDS came a host of other medical issues, some of which required a wheelchair and feeding tube. Despite all this, Destiny retains a radiant sense of optimism and strives to help others.

When she’s not mentoring fellow patients, she answers a crisis hotline, providing hope and help for people with depression or thoughts of suicide.

The adventurer: Greg

“I try not to let vEDS affect my everyday life. I can do most normal things. Living with vEDS has helped me be more present, though. I try to live for the moment and travel every year. I just try to live life to the fullest.”

Living life unbridled

Greg was diagnosed with vEDS at 27, but he doesn’t let his disease define him. He’s a digital electronics engineer who loves the outdoors and is a regular at Burning Man. A former NASA employee, Greg uses his organizational skills to manage his health. He’s determined to stay on top of his condition and live life to the fullest.

The warrior: Meg

“I don’t know what ‘normal’ is for a family. And I don’t know what a ‘normal family’ would be like with our health issues. This is a different kind of life. But I can still be a mom, and I can still come out with a positive outlook. vEDS didn’t break me.”

Advocating for herself and her children

Meg and her two young children were recently diagnosed with vEDS. As a mother, Meg must advocate for both herself and her kids. As a nurse, she’s able to draw on the insights she’s gained while caring for other patients. That doesn’t make it any easier, but through the rough spots, she’s able to stay grounded and focus on what really matters.

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