I mean, to be honest, it’s been really hard in recent times. I was a dancer for 7 years and a very active child and even through middle school I was very active in spite of medical difficulties. I definitely loved to just run around, go out and not be sitting down all the time, but now on a day to day basis it’s very hard, I have to stay with my leg elevated most of the day.
Erica, young adult, Klippel-Trenaunay syndrome
We just take it day by day
Mom: When she was 4, after she recovered from the surgery, we got her in some compression garments and that seemed to help her pain, she could walk around. She uses the wheelchair for long-distance walking, and she really can’t walk over 15 feet without getting tired. She’s got a little bit of a leg length discrepancy too. But she does walk around, like at school, she walks around in her classroom, and she just uses the wheelchair to go over 15 feet, really… If she doesn’t wear her compression, she can’t hardly walk around, and she wears a 50 to 60 pressure gradient, which is pretty high. Then other times she’ll get these little blood clots and they’ll cause pain. Why don’t you talk about your pain?
Caitlin: Well, sometimes one of my toes hurts when you just touch it, and sometimes I just can’t even touch it because it hurts so much and when it hurts like that, it bleeds a lot.
Mom: Everything we’ve dealt with has been pretty much like day-to-day kinds of things. We didn’t know how to expect it and we couldn’t have really prevented it. We just take it day by day.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
It’s more continuously a problem
The infections were a big thing, the bleeding is a problem and obviously that leg has always been bigger than my left leg, even with all of the debulkings, so there’s like, mobility issues on a daily basis. I’ll always be uneven, though we’re making me more even, and you can expect a fair amount of pain, swelling in the limb itself. I also have problems, like I have a scoliosis because I’m off kilter, I have a tendency to get tension headaches, again just because I’m imbalanced so that’s something that isn’t as major a problem, but it’s more continuously a problem.
Sarah, young adult, Klippel-Trenaunay syndrome
She’s got a very good attitude about things
Mom: I wouldn’t even really say it’s a challenge, but when you have something that is so apparent, you know? As soon as you walk out the door, everybody’s looking; that kind of a thing is difficult to have. It’s hard enough to have a disease, but then to have a disease that you’re wearing right on your face so everybody’s seeing, within the first two seconds, you know that’s definitely challenging.
Ashley: There’s not any like, real challenges that we have. There are people who’re staring, but it doesn’t get to me.
Mom: She’s got a very good attitude about things. You really have to. You’ve got to have a big sense of humor and a good attitude.
Ashley, teenager, and mother, Lymphatic malformation
You have to be careful because you look so normal
I mean, with the exception of the scars on my neck, nothing is noticeably wrong with me now. I walk normally, I don’t look look stiff, I can move my neck around. My doctors actually told me like, “you have to be careful because you look so normal.” I can’t get bumped into really hard or anything like that, so I’ve been told I have to be particularly careful because I look so normal now. It took some time, but after a while my social life and all that stuff pretty much just went back to the way it was, I was just a little less active in terms of sports.
Kevin, young adult, Gorham Disease
Quite a few challenges
Because my LM involves my face, mouth, neck and airway, it has led to quite a few challenges. My speech is not as clear because of it. A lot of people who don’t know me have difficulty understanding me over the phone, so I often have family or friends help with phone calls to doctor’s offices or business related calls. I have a difficult time eating certain foods, and am often embarrassed to eat in front of other people. I have to take care of my trach on a daily basis. I can’t swim because of my trach, which is a real bummer because I enjoy being outdoors. When I was younger, I had to have a nurse with me all of the time when I was attending school (which was a real drag when I was in high school) because of my trach. But, it was a small sacrifice to make in order to be able to go to public school.
Emily, adult, Lymphatic malformation
I am very fortunate for all of the things I can do
Because I have a trach, I am not able to swim. I do hang out in the shallow end of the pool and can wade in the ocean. However, at this point in time, I’m not able to really go swimming. No cannon balls into the deep end. No scuba diving or snorkeling. No surfing. All things I dream of doing but cannot do.
When I was in college, I did think about joining the Army. But they don’t really like trachs and complex medical conditions.
It stinks that I can’t swim or serve my country, but the way I look at it is that I can do so many other things that some people aren’t fortunate enough to be able to. In the grand scheme of things, I am very fortunate for all of the things I CAN DO.
Emily, adult, Lymphatic malformation