VA_blue_CVM Cautiously optimistic
My view on the future is kind of cautiously optimistic. Certainly if you asked me a few years ago I was much more optimistic because I hadn’t had as many health issues as I’ve had. It was always my plan to do undergraduate and then go right into medical school, and I just don’t think that’s physically viable for me at this point. The surgery I had this summer should be one of my last major surgeries, but I still have to get the cellulitis issues and other things under control. I’ve kind of shifted gears, and I’ll probably do some graduate work or a masters, and then either stick with that, cause that’d be perfectly fine, or give myself a little more buffer time to get things under control. So overall I’m still pretty optimistic, but I think I’ve gotten better, even in the last year or two of gauging my own abilities. I think honestly I could probably go right into a very competitive post graduate world, but it would be a lot of stress on me and my body, so it might be better to give myself the time I need.

Sarah, young adult, Klippel-Trenaunay syndrome


VA_blue_CVM It’s certainly frustrating every once in a while
I’m going to say it’s certainly frustrating every once in a while. For the most part I’m just settled in with it. Because I’ve been thinking about these things for such a long time, like I’ve known since early childhood that some careers just wouldn’t be viable for me anyway. I lucked out because it’s not something that I’d want to do, but some of your choices are taken away from you, which doesn’t happen with everybody. It certainly happens with many other people who don’t have the same issues that I do, so that’s always kind of frustrating I think. I had a long year this year, for the most part I’m good with fighting a somewhat uphill battle, but every once in a while you kind of just get tired, and it would have been nice if I could have just done school in four years, and gone on, and not be balancing all these issues. I’m always very optimistic about the progress that I’ve already made, but I also acknowledge that there’s still a lot left to be done. Sometimes that can be a little daunting when you look at what’s ahead of you, but again I think as long as I’m moving in the right direction then that’s generally enough for me to kind of get over those dips.

Sarah, young adult, Klippel-Trenaunay syndrome


VA_pink_VT Luckily I’m okay for now
My situation stands as is. I’m well, but I’m going to probably still have problems in the future… I worry especially now that I’ve relocated and I have to meet people, doctors that I haven’t met before and I to try to explain my illness to them (which I’m not very good at, it’s too complicated) and going through the same thing and maybe finding out that there’s something else wrong with me that I didn’t even know about. Of course, the child; what if I actually want to get pregnant, how is that going to change? Accelerate my illness and just suddenly wake up and say, well, something is happening to this body? Stuff like that, so there is anxiety there, I have it. It doesn’t go away.

Lena, young adult, Kaposiform lymphangiomatosis


VA_boston bay_VM I will definitely go and do it
Steve: Going into the surgery to remove my eye, I knew my vision was gone. Because I was blind my whole life I didn’t really have any grief about that, losing vision. All I really hoped was that it would stop the pain, that’s all I really cared about. Right now, if they come up with some safe treatment that will get this stuff out of my body, I will go and do it. I’m saying safely, safely get it out, remove it, destroy it. I will definitely go and do it. Not only will I not have to worry about the annoying moisture thing but I won’t have to worry about the future and I will have some form of relief. So with my LM, that’s really what my hope is, hope that no pain comes back, hope that no complications come and hope that they comes up with some sort of treatment to completely destroy it or whatever.

Mom: His most recent scan was very successful. They say a lot of shrinkage of the LM in the orbital area, which is difficult for microcystic and they were very happy with the results, he just had the scans done very recently post-operatively and they were very happy with the results.

Steve, teenager, and mother, Lymphatic malformation


VA_boston bay_VM Always sitting in the back of my mind
The toughest part about having it… I mean I think it’s just always sitting in the back of my mind. Every second of everyday it’s always just sitting in the back of my mind, like I have to be a little careful about lifting heavy objects; there are orthopedic issues that I have to be aware of. At the same time, just knowing that I have this, even though it is dormant, even though I’m treating it, I know that it’s still there, and just not knowing how the future’s going to play out, just that uncertainty. Everything to this point seems pretty stable, but I’ve had some relapses in the past, there’s like this cloud of possibility, maybe something could go wrong at some point again. So that’s probably the hardest part, where this is I’m really the only person who wasn’t killed or paralyzed by it, so there’s nobody that I can point to that’s like, this person has what you have and this is how they’re doing. I’m sort of on my own here and that’s a little bit scary.

Kevin, young adult, Gorham’s disease


VA_boston bay_VM It’s something that healthy people never think about
It’s hard to think about how I’m going to age, that’s something that sort of worries me sometimes. I mean, as much as I’ve been through and everything, I’m in my 20’s and my spine would probably be the equivalent of somebody who’s in their 50s or 60s in terms of dealing with pain and that sort of thing. So yeah, it’s a little concerning to think how is my body going to hold up as I age? My hope is that medical technology and treatment of the spine in terms of how they treat it and how effectively they can treat it advances over time, and hopefully I’m one of these people who benefits from medical advances… I’m optimistic about medicine advancing and me benefiting from that but it is concerning just not knowing. It’s something that healthy people never think about, like how’s my body going to hold up. I do think about that quite a bit.

Kevin, young adult, Gorham’s disease