Navigating vEDS as a Family

Share your knowledge with those closest to you.

Back to Voices of vEDS

By the We Are vEDS Community

Vascular Ehlers-Danlos Syndrome (vEDS) is caused by a defect in a gene called COL3A1. This defect can either be passed down from parent to child, or it can occur randomly (this is called a de novo mutation). Once a de novo mutation occurs, the affected parent can pass the mutation on to their children, even if they themselves didn’t inherit it. That’s why it’s important to talk to your family members if there’s any chance you might have vEDS.

Meg's mutation was de novo.

After Meg and her two children were diagnosed with vEDS, she urged her parents to get tested so they could figure out if the rest of the family might be affected:

"After I was diagnosed, it took a long time for my mom to get tested. I was very anxious about her results considering she has four sisters and a brother, and one of my cousins was pregnant at the time. I don't think anyone realized how her results could impact our whole family. Eventually, she got the test. It came back negative. So did my dad's."

Greg's mutation was inherited.

Greg, on the other hand, inherited his mutation from his mother. But they might not have known if Greg's uncle hadn't been diagnosed.

"In 2007 my uncle was diagnosed with vascular Ehlers-Danlos Syndrome. Then my mom was tested. She was positive. Then I was tested and I was positive too. I was 27 at the time. I was athletic, I was outdoorsy. I hadn't had any symptoms and neither did my mother."

These kinds of discussions are never easy, but they're incredibly important. Because vEDS is heritable, a positive diagnosis could mean other members of your family have the condition as well. If so, they will need to monitor it, just as you will.

Here are some tips on how to start the conversation:

Tell your story

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vEDS in Families

A download that helps family members and others understand how vEDS is inherited.

If your family member hasn't heard of vEDS, start by explaining the disease, its main symptoms, and how vEDS has affected you.

Talk about how it affects families

Explain that vEDS is a genetic condition, that you are concerned about their health, and that you want them to be informed so they can make the decisions that are right for them. You might find it useful to download and print our visual guide.

Encourage genetic testing

Ask your family member to consider talking to their doctor about getting a genetic test. Genetic testing can help confirm whether or not they have vEDS so they can take steps to manage it.

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