In this room there are five people like me
Riley: We’ve had a CLOVES meeting and that was fun because I got to meet some other people that had CLOVES which is interesting. It’s sort of weird to think about because if you’re one of fifty people in the world who have it, it’s weird to think, like, “Hey, in this room, there are five people like me, or ten people like me.” That was a really cool experience.
Mom: She has a buddy who’s 8 who lives in California, and they’re actually working on the brochure together because her mom’s on the board with me. They did face time last time and that was pretty cool, and she came out for the family conference.
Riley: I’ve seen her face to face maybe 2 or 3 times.
Mom: 2 or 3 times, yeah, and then you also emailed with an older kid with CLOVES, right?
Riley: Yes, her name is Amy and she is 16 and she has CLOVES syndrome and it was fun to meet her and we started emailing back and forth. We haven’t gotten any contact for a while, so I’m probably going to do that again.
Riley, child, and mother, CLOVES syndrome
Nothing beats that feeling
I feel very thankful because online I have this amazing group of friends throughout the country and other countries who have KTS. It definitely helps to have that support system because I have the greatest family I could possibly have with all this, and the greatest friends I could possibly have, but nothing beats that feeling of someone who gets the exact pain you’re going through and lives with the same thing you do. To have that support system online through KT groups is so important right now because there are many days where it is easier to kind of feel trapped inside your house. In my case the pain has gotten to a point where I can’t just like, go out normally like a kid my age. It can definitely be a little bit lonely but it helps to talk to other people who are going through the same thing.
Erica, young adult, Klippel-Trenaunay syndrome
It’s great to find someone who you can really relate to
It’s been very helpful talking to others with KT. I definitely think it kind of filled this gap that I had when I was just entering my teen years going through this, and I didn’t know anyone else with KT. I definitely think I was seeking to meet other people who were going through similar things as me. For some reason in KT the infections can spark up during your teen years, so to talk to other girls who went through the same thing in high school, where they started to get these infections all of a sudden and how it impacted their life socially, how it impacted their life maybe at home, or just how it impacted them going out and doing things. It’s like “Oh wow, I wish I had known this person years back,” but it’s so great to find someone who you can really relate to and who you can talk about stuff with this medical condition you might not feel comfortable talking to your high school friends about because they wouldn’t understand and you couldn’t expect them to because they don’t have this condition.
Erica, young adult, Klippel-Trenaunay syndrome
There’s somebody else who’s going through a lot
I was told a young girl who had kind of the same like me. The girl was in the hospital as well, I wanted to meet her, but I never did. It would have been nice but I didn’t—I never got around to it… I would want to hear their story and just tell them to just be strong and that there’s somebody else who’s going through a lot as well, and just to speak to a girl or a boy and talk to them, just talk to them, make them feel better, and tell them that they can do it.
Lena, young adult, Kaposiform lymphangiomatosis
Somebody who truly knows what I’m going through
I never really had an opportunity to talk to other families when I was younger. There was an older girl I knew of when I was little, but she was from Brazil, so it was hard to keep in touch. Through the internet I have been in contact with another girl who is a few years older than me that has LM similar to mine. It has been a great opportunity to be able to talk to somebody who truly knows what I’m going through and really understands how I’m feeling. One of my surgeons from when I was a child does ask me to talk to some of his patients who have a vascular anomaly like mine, and I try to meet with them.
Emily, adult, Lymphatic malformation
We are our own little support group
As far as me contacting people for the questions I had, I found it emotionally supportive, especially this one lady because there was so much stuff we had similar with the misdiagnosis, where for years you’re fine and then boom one day you just have this shooting pain or you see blood or whatever, you start having these symptoms. And again, you go to the general hospital, and nobody knows, it’s stress, they think it’s this and it’s that, like something you ate which it can’t be. So we shared a lot of that, and about getting picked on while growing up. It kind of made me feel better to know there’s somebody else out there that has this or something similar and went through the same experiences. So it’s like we are our own little support group and we are still in contact.
Lucy, adult, Blue rubber bleb nevus syndrome
Growing up it’s easier and it’s harder to talk to people about it
I would love to help another person. I think growing up, it’s easier and it’s harder to talk to people about it, it’s kind of a catch-22. It’s like a bittersweet thing, but I think it would be helpful. I think children would feel a little bit less alone. Even now, I hardly ever see anyone with the same condition, and I know that there’s a huge clinic that sees patients all the time… [What I would say] depends on where there condition was. Like I said, for me, being able to do something, developing a real ability to do something physical or even anything in the arts, I would be a huge advocate for. I think it’s very therapeutic. I would definitely try to persuade that person to find something that they’re really good at and that they really love— I think that’s true for anyone, though, you know? To get through life and find something that you really love, that you’re good at, and then just keep doing it.
Katherine, adult, Venous malformation