vEDS Through The Eyes of Loved Ones

Hear from three Voices on both the challenging and rewarding parts of caring for someone with vascular Ehlers-Danlos Syndrome (vEDS).

Back to Voices of vEDS

Nothing is stronger than love

By Joan
Daughter has vEDS

When my daughter was 12 years old, she came home from a cross-country meet doubled over in pain. We took her to the emergency room, thinking there was something wrong with her appendix. But it was her colon. Her colon had ruptured.

We didn’t know what caused the rupture, but the pediatric surgeon assured us they would do whatever they could to figure out why it happened—it was such an unusual thing to happen to a 12-year-old. So they sent a bunch of lab work out for testing, and they found the COL3A1 mutation. My daughter, they told us, had vEDS.

All of that was just dumped into our laps when she was only 12 years old. I don’t think she understood the magnitude of it at the time. And I wanted to protect her from the pain of it all.

When she was in grade school, I would go with her on field trips. As she got older, and went away for jobs or internships, we would make sure there were hospitals in the area. Now she’s 27 years old and living away from home. She’s much more proactive. Of course, I’m still involved with doctor’s appointments and things of that nature, but she’s taken the reins as she’s gotten older. She doesn’t like to bring any attention to herself, and I’ve respected that. I think she does everything in her life knowing vEDS is hanging in the background, but it doesn’t stop her from achieving her goals. That’s been an inspiration to all of us. She’s just not wired to feel sorry for herself. She doesn’t want sympathy. She never has.

Though she doesn’t want to bring attention to herself, she’s realized the importance of her voice in the vEDS community as she’s gotten older. A few years ago, she ran a marathon to bring awareness to vEDS, and she’s been active in a support group for patients with vEDS.

My advice if someone you love has vEDS? Take a deep breath and continue to live your life. Nothing is stronger than love.

You need to let them handle their condition the way they want it to be handled. I think we’ve done that with our daughter, and it’s made things a little bit more comfortable for her. She can do what makes her happy, makes her feel like she’s bringing awareness to vEDS in her own way. We don’t really dwell on what could happen. Life is really hard, but I don’t like to think like that, and I know my daughter doesn’t. She is much stronger than I am. She has set the bar for all of us.

The true test

By Travis
Wife has vEDS

When my wife was diagnosed with vEDS, we were pretty young and thought we had everything figured out. She was just starting her career, and we had this plan to get married and do all these things. Then life happens, something like this comes along, and you kind of get punched in the gut. That was a true test. I never had a doubt in my mind that she was the one. None of that changed because of what happened, but our lives certainly did. Making it through something like that together, I think that’s got to be true love.

I tend to think about things that you probably shouldn’t be thinking about when you’re in your 30s, like what happens if she passes away. I don’t necessarily talk to her about it, but these kinds of things are always on my mind.

Regardless of all that, as nervous as I get, she’s the one who really truly faces it every day. I know when it’s hard on me, it’s ten times harder on her. She’s the one who’s in pain. So I try to keep things light and positive. I try to be supportive, and be her advocate when I have to be. Especially when we go to the doctor’s. To be there and educate doctors and nurses about her vEDS. To be her eyes and her ears in that sense. And I try to make sure that life stays normal too. You have to find that balance of managing the disease and just living life.

A job I'm thankful for

By Raul
Daughter has vEDS

I have a daughter with vEDS, and it’s very difficult because I’m hardly at home because of my job. I’m a truck driver for UPS, and I’ve been out on the road when she had the two events she’s had. It was terrifying being so far away, having to drive back home and then go right to the hospital. I’d rather be there when those events happen.

My job is to try to make things easier for my wife and my daughter. My wife needs a lot of emotional support. Having a daughter with vEDS has definitely changed my outlook on life. All I think about is her, and the possibility that something could happen to her.

I try to offer my daughter advice on what she eats, and what she should or shouldn’t do. But now she’s been living with vEDS for a while now, so she pretty much knows what she can eat, or what she can drink, what she can do. But I still push a little bit. She just says, “It’s okay, Dad.” All I can do is offer my advice.

When she was in elementary school, she couldn’t participate in any of the activities in PE class. She can’t play sports. Diving was something she used to love, but was very, very dangerous for her. We would tell her to just get in the water and walk around. That’s exercise enough. She was still too young to fully understand.

Parents need to understand if they do find out if their kid has vascular EDS, they need to learn as much as they can because not every doctor knows about vEDS. It’s our job to do the best we can to keep our kids alive.

If you have a child with vEDS, my advice is stay strong and be thankful that she’s with you, or he’s with you, instead of getting mad at the disease. That’s what gets me through.

Thanks for signing up!