Like a tumor that grew with me
I have a vascular anomaly located on my leg and upper body. It’s kind of like a vascular tumor that grew with me when I was little… Since I began to walk, that’s when I noticed. I wasn’t walking properly. I was in pain all the time and also the tumor had grown with me so that was pretty obvious as well.

[Later] I was very shy; I couldn’t really keep up with other kids to play with them. I had a lot of bleeding and pain, I was losing a lot of blood, I was faint, I didn’t eat a lot, and I was very skinny.

Lena, young adult, Kaposiform lymphangiomatosis

 

It seemed like nobody knew how to fix me
It was frustrating because it seemed like nobody knew how to fix me. This went on for about a good month, month and a half or so that I was in pretty significant pain and nobody could quite put a finger on what it was. So just the long amount of time that I went without knowing was extremely frustrating, and it was a really different feeling because 9 times out of 10 in life you do something, some sort of injury or illness and you can put a finger on what it is right away. I have a flu; I need to stay in bed for 2 days. I have a broken arm; I need to be in a cast for 6 weeks. To have something and just know nothing, and have a doctor tell you they don’t know, it’s frustrating and scary.

Kevin, young adult, Gorham disease

 

As normal as possible
Growing up, my parents tried to make my life as normal as possible I guess. They tried to explain to me, “You have these rare little dots,” or whatever they would call them “and there are certain things you can play with your friends, but there are things you can’t.” That’s how they explained it to me. When I was in school and we had recess I would have to sit out, or if there were other kids that had asthma or whatever and couldn’t play, they would give us a craft project to do or something. I just needed to be careful, and they gave me restrictions. They kind of taught me like, “if you do this, you’ll get hurt and if you don’t do it you won’t get hurt and you’ll be fine. And if you feel this way you have to tell the teacher and go lay down in the nurses office,” so that is how I grew up. A lot of my friends asked me if I felt I missed out, like if we went to the amusement parks and I couldn’t do roller coasters or the whip rides, but I think that because I never experienced that, I don’t feel like I missed out on it because it wasn’t something that I was able to do and then it was taken away from me. But there are things now, as an adult I would say, that I feel, not that I missed out on, but kind of like why me, or why is this happening to me type of thing. But just growing up I just knew that I had restrictions.

Lucy, adult, Blue rubber bleb nevus syndrome