A seminar for KTS
The Mayo Clinic has a seminar for KTS, and they rent out the Holiday Inn and they have the big indoor pool and all the kids with KTS kind of meet up. My wife and I were talking about it, and we’d like to join so we could see other kids with it and see how they’re dealing with it, and talk to those parents also because maybe they have some advice for us. It’s always good to talk to other people and I think that’s probably our next step… I would say [we would talk about] the average things, you know, like what makes the kids feel better? Are there any other new therapies out there that haven’t come to us yet? Clothes issues, fitting issues—and just kind of try to further our education; is anything else out there that we don’t know about? That’s what I think what the conversation would be for.
Father of Erin, child, Klippel-Trenaunay syndrome
Seeing that she’s not along is a huge thing
I think you need to educate yourself about whatever you’re dealing with. Especially if it’s something so rare, you’re going to run into doctors who don’t know what you’re dealing with, and you need to find support, whether it’s family, other parents, other people with the same condition. I think that support, knowing you’re not alone is huge, and that you have their experiences and their advice. The other thing that’s been awesome with that, every two years there’s a group meeting at the Mayo Clinic that is KT patients. The last two times we’ve gone that’s been a huge thing for her and her brother, seeing that she’s not the only one. Because there’s no one else, as far as we know, in our state that has this. So sometimes I think she feels awful alone, but seeing that she’s not alone is a huge thing and again I think the doctors help with that, because they’ll say, “yeah you know we’ve done this before and we’ve seen this before and that’s a huge thing”… At the convention we’ve seen adults all the way up to the elderly down to infants that have KT, and so I think seeing it on other people makes it a whole lot easier.
Father of Natalie, child, Klippel-Trenaunay syndrome
It’s nice to see some older kids
At this point, we’ve talked to a ton of families with CLOVES. Now, probably 30 or 40, I’ve talked to a lot of those families now, which is great because that didn’t exist. What’s really great is that there are some kids who’re older now who were diagnosed with something else but now are diagnosed with CLOVES, so it’s nice to see some older kids. There’s some teenagers, there’s some young adults, which is great because for a while it was like, “Do those people exist? Where are they? Are they all deceased?” So that’s been great… we just talk about what’s come up, people’s experiences, providers, negotiating or navigating provider systems, you know, “Has this happened to your kid? This is the weird thing that happened to mine.” There’s a lot of stuff that happens on social media that’s good, mostly good, sometimes it’s not [laughs], so people are connecting a lot in that way.
Mother of Riley, child, CLOVES syndrome
She had never met anyone else that had her same problems
I speak to as many people as I can come in contact with or meet, but when we go to the Klippel-Tenaunay Syndrome (KT) conference in Minnesota, Caitlin has talked to a lot of young kids. She remembers that so well…
The first time she remembers the conference, she was 6, and when she met another child—she wore the compression hose and she had pain issues, and she had the port wine stain. It was amazing to see her connect with someone else that was like her, because before that she had never met anyone else that had her same problems or the same issues that she deals with and stuff… She has an email address, but she doesn’t have Facebook and she doesn’t have all that kind of stuff yet, but there are some groups in the KT support that I think—she’s getting older now so she can do that and she can really relate to other kids and other people her age, and I think that’s going to be good for her more than anything else, really.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
There’s definitely a community of people around
There is a woman up in New Hampshire that had a child with LM the same time that Matt was born. We stay in contact, like she emailed me a few months ago asking about “Have you had sclerotherapy for Matt since the last time we spoke?” Because her daughter’s a little older, they had both kind of gone through the treatment at the same time. We stay in contact and kind of ask, like if something happens, for example her daughter had an accident, bit down on her tongue, and her tongue was really swollen and bled and was protruding out of her mouth, and she had never had any tongue issues before. So she emailed me asking “Has this happened to you? Just so you know, this happened to her, and you know you may want to watch out for that type of thing.” So yeah, there’s definitely a community of people around, which is nice.
Mother of Matt, child, Lymphatic malformation
There’s barely anything
Mom: It was tough.
Jake: There’s barely anything.
Mom: Yeah, there’s not much out there. The doctors, they don’t know why it happened, where it comes from. They’re working on, not a cure (well hopefully a cure someday) but they’re doing research, and hopefully someday they will have a medication, remove the malformation, take the medication and stop it from growing back. But, you know, when Jake was little there was another kid in the hospital at the same time who had it in the face. We really don’t know anybody who has it. What I would love is to maybe meet somebody else with the same problem, and I think Jake would like that too. Just to say, “Hey, I have the same problem, how are you dealing with it, how can I encourage you?”
Jake, teenager, and his mother, Lymphatic malformation
There aren’t too many kids out there with this
I think it’s hard too—there aren’t many kids out there with this, and now that she’s older it might be something that she can reach out to people. Maybe some kind of a group with kids with facial differences would be good for her. I’ve spoken to parents in the past, and I think maybe the parents that I was just speaking with were very negative and I couldn’t be around that. I think too because it’s so rare that the couple parents that were out there just thought that they were the experts and, you know, “Well, you should be taking her here, and you should be doing this, and you should be doing that…” It’s probably just the few that I had gotten in contact with but I kind of backed off of that
Mother of Ashley, teenager, Lymphatic malformation