Combined Vascular Malformations
Riley: CLOVES makes lumps and bumps inside and out of your body… It’s like having lumps and bumps inside or out of your body, and usually you have to take them out with surgery. Usually I don’t explain that much more unless they have questions about it because that sort of gives the basics. If I said everything that I knew, that would take a while, and also it’s pretty confusing because there’s a lot of big words.
Mom: Riley and one of her friends with CLOVES are working on a brochure for kids, and so they actually have started thinking about a motto and/or some new words that go with the CLOVES acronym, right?
Riley: My mom’s favorite is, “You can’t spell CLOVES without LOVE,” and I made up a motto, it’s, “We’re custom-made,”
Riley, child, and mother, CLOVES syndrome
Most of the time I ignore them
When they ask me, “Why are you in a wheelchair if you can walk?” I just shorten it, like I just say “I get tired if I walk long distances.” I don’t tell them the whole thing; I just sort of keep it to myself and sometimes I just ignore them when they ask me questions. Most of the time, I ignore them… The people who are my best friends, I sort of talk to them more than people who are just not my best friends. I don’t tell them about me unless I know them really well.
Caitlin, pre-teen, Klippel-Trenaunay syndrome
Levels of details
How I explain it now is kind of levels of details. If people are just curious, or they comment on the fact that I still have a pretty obvious limp because I’m still uneven, if somebody says like “you’re limping, are you ok?” I explain, “yes, I am, I have this condition” and I usually keep it pretty vague for people who are just passing through or someone I’m interacting with once or twice. For people who know me better, friends, people I work with, then I share more details about “well it’s like vascular and orthopedic abnormalities, I have these infections” I start with just very superficial information addressing the question at hand, like are you ok? Yes I am. If people want more information about what the condition is, what exactly is going on, then I share it kind of on need-to-know basis, but I’ve certainly been a little more proactive in being like, this is what it is, this is how it affects me.
Sarah, young adult, Klippel-Trenaunay syndrome
It’s just one of those things where something goes wrong
Ashley: Normally I just say that I was born with it. I never really had to explain the disease, so I don’t know how I would.
Mom: I think she just says lymphatic malformation and then says that she was born with it, she’s doing treatments and hopefully she’ll get her trach out. I think most of the questions from kids have been about the trach, what that was for moreso than anything else.
Ashley: People accept it. I mean, I don’t know what they’re thinking, but they’ve just gone on with it and understood.
Mom: I’ve always just said that it’s a lymphatic malformation, it’s a malfunction in the vascular lymphatic system, it happened in utero, it was nothing that I ate or did to cause it. It’s just one of those things where something goes wrong, that’s all.
Ashley, teenager, and mother, Lymphatic malformation
I just knew my eye was different
When I have my [prosthetic] eye in it looks very disfigured… When someone would ask me about it when I would have my eye in, I didn’t really know how to describe it. I just knew my eye was different, and I was told I had a tumor or something, so I would just say “I have a tumor in my eye.” And it makes it look that way, I really had no idea how else to say it other than that. My friends, they didn’t really care about it, they just viewed me as everyone else. Once they knew about it, because of the pain episodes which were quite severe, a couple of them did feel pity on me because of that. And that was really how people viewed me.
Steve, teenager, Lymphatic malformation
You don’t have to treat me any differently than anybody else
Even to this day, I still don’t tell people about it unless it’s somebody that I’m close with. I don’t know if it’s so much that I’m embarrassed about it, just the way that people react to hearing the word disease. For some reason, a lot people just have sort of a weird reaction to it or it scares them maybe in some way. It tends to make people act a little differently. I think I like to know the person a little bit before I tell them those things because I think it takes somebody who’s a little bit more mature to hear about what’s wrong with me and still understand that I’m still just a regular person. I’m not contagious; you don’t have to treat me any differently than anybody else. So yeah, I’m still careful about who I talk to about it.
Kevin, young adult, Gorham’s disease
It’s like a sponge
When I was younger, I think what I would say to somebody was “It’s not cancer” because almost everybody assumes it’s cancer, it’s just a lump. And if they asked me what made the lump, I would say it is blood cells, it’s like a sponge. A sponge inside of me that soaks up the blood and then squeezes it out and then it goes towards my heart. That’s how I would explain it to somebody. It depends on the age group. Because I volunteer with kids with disabilities now, I have little ones that are 6 or 7 that will be like, “what’s that? You have a boo-boo” if I don’t want to get into it I will say, “yeah, it’s a boo-boo, its fine, don’t touch it,” if they try to poke at it or whatever. Or I will say, it’s just a little mole or mark or something like that. And growing up sometimes I did that, like the blue blebs on my skin, it’s just a mark, it’s a birthmark, I have a mole.
Lucy, adult, Blue rubber bleb nevus syndrome
People generally don’t ask a lot of questions
Some people really don’t notice for a long time, and other people just choose not to ask. Or I think what happened was sometimes people would ask other people that knew me instead of asking me, which I also don’t like as much. Maybe it made things a little bit easier for me in some ways, but in other ways I never knew if that person wanted to ask me something or if they already knew, and I didn’t want to bring it up… People generally don’t ask a lot of questions. I simplify it because most people who aren’t in the medical field, they don’t really understand anyway, so I just kind of, I keep it short and sweet and then that’s it.
Katherine, adult, Venous malformation
I, for one, say hemangioma
Joe: In school, teachers will come up and they’ll be like, “So, do you want to share? Are you okay talking about this?” And I’ll be like, “Yeah, sure.” I’ll walk up and I’ll explain to them how I got it. I won’t go into depth, I mean, I won’t tell them everything because they won’t understand half the words I say. “What’s a vascular anomaly? What?!”
Mom: So one of the things we also did is I started him in school very early. I put him in right at three, I wrote a book that explains just a little bit. You know, “All the blood from my heart that was feeding my other organs was going to my leg only and caused a life and death situation and they took off my leg and I got to go home to be with my grandmas and grandpas.” We just drew pictures, it was a short book, but the teachers would read it, and so that would be very helpful with the other children and the teachers understanding what he had gotten through.
Joe: It was a pretty general thing. It’s different when I’m telling someone that works in a hospital environment and knows medical history and all that, I had a hemangioma—well, when I’m saying hemangioma to kids, they’re like, “What?”
Mom: A lot of times we’ll just say birthmark.
Joe: Yeah. Actually, I do say hemangioma, and they’ll still be like, “What??”
Mom: It’s a birthmark, a dangerous one. For some people, for some people it’s not dangerous.
Joe: I don’t use ‘birthmark’, I for one say ‘hemangioma’.
Joe, pre-teen, and mother, Reticular hemangioma
How do you explain it?
Mom: How do you explain it?
Joe: I’d probably go and say, you know, “when I was a baby, I had a hemangioma.” When I’m talking to kids, I’d just be like, “what that means is all the blood from my heart was going to my leg and it was shutting down the rest of my organs. The veins weren’t going and blood wasn’t flowing to my body at all, just down to the leg which made it about this size, and it always just becomes whatever my ankle is. It’ll become a little bit like this size,” and I’ll reach down and I’ll grab my ankle and then at that point, I’ll pause, and they’ll be like, “Whoa, that’s a big leg, that size.” Then I just continue explaining, “I had that hemangioma and I was air-ambulanced to the hospital and a couple months later, they had decided to cut it off after they did a little research, and found out some things about it, and I’ve had 52 surgeries,” is basically how I’ll be ending it after Wednesday. Right now I’m ending it as, I’ll have 52 surgeries on Wednesday.
Mom: Your 52nd surgery. As a parent that is a baffling number. No parent ever wants to say, “my 12 year old child has had 52 surgeries. Going to surgery is never easy…not ever.
Joe, pre-teen, and mother, Reticular hemangioma
It’s a pretty massive tumor on my leg
It’s a pretty massive tumor on my leg, not so good looking. It can get in the way of my life, it’s painful. It gives me a limp, too, which everybody notices… I would just tell other people that I have a tumor mostly on my leg and other parts of my body, that’s what I would say. I could show it to them and they’ll see. Some have seen it, they see bumps on it and some of the times they say, “Oh, is that a bruise?” and I say, “Oh, yeah, yeah,” if I don’t want to go too much into detail. So it’s nice if sometimes they think it’s just a bruise, but also it’s not nice because they could think that I’m getting beaten up by somebody. I got that a couple of times in school. I didn’t know what to say to that.
Lena, young adult, Kaposiform lymphangiomatosis