Eventually if you want to you will get there
With Klippel-Trenaunay syndrome a birthmark accompanies the area. You can have it in your arm, you can have it in your leg. A purple birthmark is very typical and a lot of people (and I’ve gone through this so I know) are very self-conscious about exposing it. A lot of people ask if there’s a right and a wrong time to expose it, as far as wearing shorts or capris. I’ve gone through times where I’d have days where I felt shy and I didn’t want to wear skirts or shorts on hot summer days. I would just tell anyone you have nothing to be ashamed about, this could have happened to anybody, you obviously didn’t choose to bring it upon yourself. It’s the same thing with all medical illnesses. I’m very empathetic in situations like that, so I feel like no one should be ashamed of what they were born with. I definitely think as you become older you become more comfortable with your body and if you do choose to expose it that’s great, but if you’re not so comfortable exposing it, it’s a process so don’t be too hard on yourself, give yourself some time to get there and eventually if you want to you will get there.
Erica, young adult, Klippel-Trenaunay syndrome
People commenting on compression garments
As a child, I don’t think my compression garments were really commented on because it was so obvious. Maybe neon isn’t the way to go if you’re going with subtlety, but it was very clear that I was wearing these things. I was fortunate enough to go to a small private Catholic school, and I was with the same people K through 8 and so I really grew up with them. It was kind of like, I always knew I had this condition and everybody else knew I had this condition. Maybe in the times that I can’t remember because I was that little, there was some explaining of like, this is what it is, but certainly after 2nd or 3rd grade I never remember it ever being even a question with the group of people I was going to school with because it was just the way it was. I guess it’s the same way if you have a sibling like that, same way that my brother and sister don’t tend to ask about it either, because that was just your experience.
Sarah, young adult, Klippel-Trenaunay syndrome
I just wanted to fit in
I went to middle school in the US. Once I came the people in my class were very accepting, some of them, and some of them didn’t quite grasp what I had, the whole illness. I just said it pretty simply, that I just had a sick leg and I didn’t go into detail, I didn’t want to. As I got older, I tried to hide it even more just because I didn’t want to be outcast and I just wanted to fit in and not be questioned all the time, and having it on my leg, I could cover it, so that helped.
[Later] It would definitely get in the way because I was thinking, “Oh, look at everybody else at my age, what they’re doing, and I can’t really keep up with them and look at what I’m doing, I’m giving shots to myself, I’m going to all these appointments and months of hospital stays.” It took away from socializing a lot with my friends and trying to hide as well. I was going through what I was. I know they say it’s important sometimes to share, but I never felt a need too much for that because I didn’t want people to feel sorry for me, you know?
Lena, young adult, Kaposiform lymphangiomatosis
It’s part of being younger and normal
If I’ve been drinking and all that stuff, even though I started doing it later, I couldn’t do it because of the medicine. It wasn’t important, but it’s part of being younger and normal, it’s part of your social life. I also couldn’t wear certain clothes. I didn’t want to wear really short miniskirts but I couldn’t wear the clothes that I wanted, and going out with friends and looking nice like they did. I couldn’t be part of playing sports because I wanted to do something, I wanted to play basketball or volleyball and I couldn’t do that. I couldn’t do plays and acting and I just had to worry about if I’m going to bleed or anything.
Lena, young adult, Kaposiform lymphangiomatosis
Generally speaking, I’m not ashamed of my condition
I’ve never been ashamed or embarrassed about having a LM. I’ve been embarrassed at times when I was very swollen and puffy from surgery or cellulitis. As I mentioned before, I’m insecure about eating in front of others. But, generally speaking, I’m not ashamed of my condition. It’s been a very long, bumpy road filled with detours and obstacles but I would not be the person I am today had I been born completely healthy. My LM has allowed me to be a good daughter, sister, granddaughter, niece, aunt, and well-rounded human being.
Emily, adult, Lymphatic malformation