Definitely just having supportive people around you, like in my case my parents, my friends, my guidance counselor at school, my school nurse who I had known for a while, that’s very important. I really can’t stress enough, just having a group of people around you who support you and who you can go to when things aren’t going right and who can encourage you to keep moving on and keep going and that it’s all going to be worth it.
Erica, young adult, Klippel-Trenaunay syndrome
It’s made me who I am
As much as it’s frustrating at times, I also feel like it’s made me who I am in a good way. I feel that you become more empathetic, you get those organizational skills, you’re able to advocate for yourself. Those are all things that any person should have, so it’s unfortunate that you’re kind of forced into that and it’s not your choice, but I’d still stay that there’s a lot that can be learned through the process. I’d also don’t think it automatically rules anything out; some people would say that with the illness that I was having at the beginning of this year, most people thought I would not be going to school at all. I think that you can find a place that works for you, you maybe have to do things in a non-traditional way, and that’s totally fine. I honestly don’t feel like if there’s really something I wanted to do, I could not do it. I think you just have to be
Sarah, young adult, Klippel-Trenaunay syndrome
Medicine is always trying to improve constantly
I think seeing my doctor regularly helps because she always keeps me up to date on new research and what’s going on in the field in terms of new medicines and things like that. It’s cool to hear about things that are maybe in the experimental stage or what have you and knowing that there are possibilities. Medicine is always trying to improve constantly, it improves from day to day practically, so it’s definitely reassuring for me to hear about things like medicines that are improving, new technology, new research, I love hearing about that or if I see an article in the paper that is about an experimental surgery that worked or something like that, I love reading about that.
Kevin, young adult, Gorham’s disease
Don’t focus too much on the illness itself
Just cherish the moment and be strong, don’t focus too much on the illness itself, on the whole sadness, just try to be together and try to be happy. That’s what I tried to do. I didn’t think too much about the fact that I was sick. If I wanted to go do something, I tried to do it. Just to be strong and be a family and don’t stress each other out and don’t argue.
Lena, young adult, Kaposiform lymphangiomatosis
It brings out the inner will in you
I try not to be too disappointed too many times because I knew that this disease had won so I did give my best in whatever I could. If I thought that I could do something, I tried to do it. When you have an illness or when you have cancer of any form, if you have any little bit of strength, at least for me, it was just good to try it, to just get up and say, “You know what? I’m going to try it. I’m going to give it my best.” It’s nice because it brings out that inner will in you and it makes you forget that you’re sick, when you’re giving your best at something.
Lena, young adult, Kaposiform lymphangiomatosis
Lena, young adult, Kaposiform lymphangiomatosis
I took it day by day
There were some rough times, but I took it day by day except I kept thinking that nothing just lasts, it’s not going to be forever, so you just have to continue on doing it. That would become my whole mentality. As I got older, growing up and feeling a little better about my health and just being surrounded by the positive people that I was and by my doctors and all the nurses over there at the hospital, I felt positive. But it was hard.
Lena, young adult, Kaposiform lymphangiomatosis
I’ve accomplished a lot that’s been hard to accomplish
I am optimistic about the future. Since the time of my surgery I’ve accomplished a lot that’s been hard to accomplish. I graduated from high school on time after all that time that I missed; I graduated from college on time after missing 2 semesters. I’ve worked some really great internships, I’m still looking for kind of my first real job in journalism but I’ve already accomplished quite a bit in that sense, and I feel like I’m capable of accomplishing the things that I want to accomplish. I want to be a professional sports journalist, and I know that I can be, so that’s reassuring. There are things that I’ve accomplished that let me know that I am capable of doing even more, as my life unfolds.
Kevin, young adult, Gorham’s disease
They refused to give up on me
When I was first brought into this world, my mother was asked by the doctors if she was going to place me into an institution. They said that I would never be able to talk, eat or take care of myself. My mother angrily refused to hear such talk. It is because of her and my family’s love, strength and devotion to my health that I have turned into the person I am today. They refused to give up on me when the doctors (at a different hospital) did. Their love, hope and determination was easily transmitted to me and gave me the strength and focus I needed to tackle each day and every obstacle.
It takes a lot of strength and courage to go out in the world each day, especially when you look different. You can leave a lasting impression on total strangers by just keeping your chin up, saying hello and being you. Stay positive, be true to yourself and don’t give up on your dreams.
Emily, adult, Lymphatic malformation
You can’t let other people define who you are
You can’t let other people define who you are. You have to be your own person and try to be a very strong, independent person and think for yourself and realize that there are some people out there who are going to be mean. It’s hard to deal with when you’re treated badly, but you’ll always find somebody who will listen to you and be your friend. If they can’t listen to you or you find that they’re making fun of you or whatever the situation is, then move on and find somebody that’s going to be a better friend because then that person wasn’t really a true friend, that’s how I try to look at it.
A true friend is going to understand and be supportive to you. That could even go for some of the parents too. Sometimes it’s very hard for people, and it might not be that they’re trying to be mean, they are just trying to understand and they feel awkward themselves, because they don’t have the coping skills and they don’t know how to handle the situation. Sometimes it might be something you can work out with somebody, but you just have to have better coping skills and be the person to step forward and say, “I am this way, I can’t help that this happened to me,” and explain your story. Some people open up and reach out to you and the people who don’t, you have to say it’s their loss, because everybody is special, everybody has a gift.
Lucy, adult, Blue rubber bleb nevus syndrome