I try to get as much information as I can
I think for me it’s been sort of a process; over time I’ve definitely wanted to find out more information. I think now that I’m in my 20s, I’m more proactive than I ever was before, but certainly all throughout my childhood if I could find out information, I tried to be as involved in my health care as I could. So surgeries, what are the effects, what can I expect from this condition? So I’ve been trying to research and find out what I can expect for my future. I would say I probably wasn’t too concerned in my early childhood but once I got into teens and certainly now in my 20s I try to get as much information as I can.

Sarah, young adult, Klippel-Trenaunay syndrome

 

You should see the books that we have
Joe: You should see the books that we have… If you walk into my room and you look at the libraries we have, medical book, medical book, medical book!

Mom: I was the person—I’d grab the chart every day to see what they had done. I wanted to know every blood lab and what it was for. I learned a lot in that time, learned everything with my heart. Very important!

Joe, pre-teen, and mother, Reticular hemangioma

 

It’s better not to look at stuff online
I should have [researched it]. I didn’t. Even at the doctor’s office, when they told me something, I completely forgot what they had told me, and I think maybe in a way that’s good and that’s bad. But I didn’t look up stuff too much because I see people when they look it up, they scare themselves; the stuff that’s on the Internet, it’s just scary. I did look it up when they gave me the name of it, kaposiform something, and yeah, it terrified me, just the fact that it said basically that people die from this. So I didn’t look up things too much. Even when I took my medicine, I thought it was good to just take it and not wait to see what effect it was going to have on me. I just tried to continue going back to what I was doing and forgetting the effect of it. It’s better not to look at stuff online.

Lena, young adult, Kaposiform lymphangiomatosis

 

It wasn’t easy to come by information
When I was really little, I would look in the encyclopedia before the Internet, and I would go for annual visits at the hospital. Actually, I saw a cardiologist there and to this day I’m not exactly sure why I was sent to cardiology; I think perhaps they thought there’d be some increased flow just because of the venous malformation, but that’s not how this particular diagnosis works. Anyway, I saw a cardiologist every year and I would always ask questions, I was a very inquisitive child … Biology books, I would just try and find anything. It’s such a rare diagnosis that it wasn’t easy to come by information when I was younger. I kind of just had to rely on what the doctors said for the most part.

Katherine, adult, Venous malformation