The thing is, you have to stay relaxed because if you’re always worried about it, then it’s not going to go well, but if you sort of act like a normal kid, then it goes well because it seems like you fit in better, and it feels like you’re not an odd one out because you aren’t.
Riley, child, and mother, CLOVES syndrome
Try to stay as positive as you can
I’d say to anyone that because you have a medical condition like this, yes it provides obstacles and a lot of difficulties that other people might not have to face, but I still think it’s very possible to lead a happy and fulfilling life. I think when you’re in middle school, high school, socially you worry about where you’re going to fit in and how having a chronic condition is going to impact you finding your place. I think if you’re honest and you’re willing to work hard and be persistent towards achieving your dreams and your goals, it can still happen. I would say that just because you have this medical condition it doesn’t have to be a hindrance on your whole life, you can still have a life of fun and you can still accomplish a lot. I definitely feel like keeping a positive attitude is necessary in order to maintain a healthy frame of mind, so try to stay as positive as you can.
Erica, young adult, Klippel-Trenaunay syndrome
Just continue to stay positive
General advice is that it’s something that certainly can be managed and dealt with. As far as my understanding is concerned there’s a whole range, even within KT about severity and stuff, so certainly I would encourage them to get as much information about their particular condition and what can be done for it. Just continue to stay positive. You’re going to have to chip away at it, I mean I’ve been doing this for 20 years, and I’m going to continue to be doing it. Just try not to get discouraged it, because honestly every surgery I’ve had has moved me in the right direction. Sometimes you wish progress was a little faster, but at the same time you know it’s just like one of those things.
Sarah, young adult, Klippel-Trenaunay syndrome
It’s good to have an outlet
I have counseling here at college, and I think that it’s been really helpful for me over the last couple of years to have just somebody else to talk to about like “wow, this week was really frustrating, my health was acting up again, I had to miss a test, I’m talking to this professor.” Because that’s something that for a really long time, the first couple years of school I sort of just dealt with on my own. I honestly think it’s good to have an outlet, that’s the other thing that I would recommend, even for kids, or certainly for older adults. I found that to be a huge help just for like dealing with my own issues, having somebody else to like be there with me like, “oh no! not again! Sickness!” I certainly found that pretty helpful
Sarah, young adult, Klippel-Trenaunay syndrome
If someone does have a vascular anomaly that they think is preventing them from pursuing something that they want to pursue, I really want to say to that person, say to yourself, “is this difference really causing me to not be able to pursue my dreams or am I just scared or am I just fearful?” And I bet that for a lot of the cases it’s just going to be fear and stuff like that, but if the vascular anomaly is physically preventing you from pursuing whatever dream you want to pursue and you feel like you can’t pursue anything else than you need to do whatever you can to try and treat the vascular anomaly. Or do whatever you can to figure out how you could pursue whatever you are trying to pursue.
Steve, teenager, Lymphatic malformation
You can still lead a pretty normal life
I would tell others that this disease is not curable but it’s treatable and you can still live a normal life. Your life doesn’t have to be over because of this disease. I’ll always have it, but it’s possible to really shut it down, to make it almost make it a non-factor in your life. Had my disease not been in such a bad place I would be almost totally normal right now. I remember my doctor had one patient who had a lesion on his leg. It was a little boy and I was going to talk to him too but I never got in touch with him for some reason. He loved skiing and he was worried about ever skiing again, and I remember thinking, “You’re still capable of doing things. Maybe you wouldn’t be able to ski but you’d still be capable of doing something else. You’re still a pretty capable person even with this disease. It’s the kind of thing that you can still lead a pretty normal life.”
Kevin, young adult, Gorham’s disease
Try to do some research on your own
Overall, I would have to say, I really push the advocacy thing and really try to do some research on your own, especially in these times. I mean, I know you can’t get worked up, everything on the internet isn’t necessarily going to happen to you, but to educate yourself. Always go for a second opinion, just so you’re comfortable with the decisions that you’re making because there are doctors who do network with each other but the world is so busy today and not everyone can remember everything, even when you’re sitting there asking that one specific doctor those questions.
Lucy, adult, Blue rubber bleb nevus syndrome
I just wish I would’ve worn all my garments
Just do what my doctor says. That’s most important, follow your doctor’s recommendations and wear your stockings and your pressure garments, if your doctor says to wear them you better, and that’s really about it… I just wish I would’ve worn all my garments and that, that’s all. I wouldn’t have had as worse problems as I did because a 500-pound leg, that’s hard to imagine what that’s like, but full-grown men hanging off of you. That’s pretty bad when I could’ve wore a stupid sock on my leg and I would’ve prevented that.
Carlos, adult, Lymphedema
It helps to balance a lot
I danced when I was younger. I took a lot of ballet and I had quite an aptitude for it, and I do feel like it got in the way as far as doing something professionally with it. Not so much sort of achieving a certain level of professionalism, but just as far as getting paid to do it, so I do feel like it was a hindrance in that… I think dance helped tremendously with that, and I would highly recommend anyone that has anything maybe more cosmetic, for the most part cosmetic, that they find something physical that they can do because I think it helps, it really helps to balance any sort of negative feelings that you have, I think it helps to balance a lot.
Katherine, adult, Venous malformation