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10 Things I Wish Others Knew About Living With Klippel-Trenaunay Syndrome

I have Klippel-Trenaunay syndrome (KTS). It’s rare — not so much that people would outright dismiss it (it has a page and everything) but enough so that I have to spell it out to my general practitioner and nurse whenever I go in for a check-up. There isn’t much in the way of research though, and there is next to no public discourse around the condition. So telling people about it — be they friends or co-workers or new employers — is never a straightforward task.

Of course, it’s understandable. Compared to other conditions, this one is not high on people’s agenda. We don’t have marches and rallies, or calls for funding bids. We get compassion fatigue. There is only so much you can do.

But I also know how lonely it sometimes feels to not have these testimonies or voices in support. Maybe this will help you if you have KTS. Maybe it will give you ideas about talking about your own condition. Maybe it will divert you from a pain episode. Maybe it will make you feel glad for your specialist. Whatever it is, I hope this helps.

1. KTS is rare. I know I said this before, but it’s worth reiterating: KTS is rare. Last time I checked, one in 20,000 has it. It’s genetic. It’s unpredictable. It’s also under-represented and under-researched. That seems broad, but it’s pretty much the basis for my next four points.

2. There is no “cure.” We live in a culture that is obsessed with making people better. But the fact of the matter is, there is no cure for me. I’ve been seen by surgeons, physiotherapists, and other medical practitioners. They were all adamant about saying the best thing they can do for me is to help me manage my condition and live a full life.

3. I’m not broken because of it. Yes, it sucks. Yes, I sometimes wish I was born without the KTS. There are times, especially when I’m around new people, that I wonder if my life would have been easier if I didn’t have this to worry about on top of everything else. I have, in some of my darker moments, wished there was a cure– even an experimental one–that would have made me more “normal-looking.”

But it doesn’t, and I am glad I have the support and the resources to help me. I know things could have been so much worse for me otherwise, and I don’t take any of what I have for granted.

4. I don’t want to give a lecture every time I tell someone about it. In some cases, it’s inevitable– like when I have to start a new job and I’m asked about pre-existing conditions. (My right leg is twice the size of my left one, so it’s not like people won’t notice.) Still, it isn’t something I want to do with my friends, or on a first date. There’s a lot of pressure to get things right, and it’s a tough balance to strike between explaining what you need to people, and being positive. I’d much rather keep things short and pithy if I can help it. And I like to think there’s a lot more things we can talk about in depth.

5. I’m really, really, not an expert on KTS. When someone learns about KTS for the first time, it’s normal to feel curious and have many questions. But to someone who just has the syndrome, it can sometimes feel like an interrogation. This is especially true if the other person is projecting “I’ve never heard of this, I don’t believe this is a real illness” vibes at you. Yes, I have lived with this since the day I was born. No, I can’t speak for every person who has ever had it, or about every little development that has occurred in the field. Please don’t treat me like an expert on the illness.

6. I am an expert on my own body. The way I’ve experienced KTS has changed over the years. As a teenager, I often got skin issues related to the syndrome. In college, I started experiencing episodes of extreme pain and fever that seemed to strike out of nowhere. Because of the way circulation works in my lower limbs, the skin looks different from what you might expect to see in a person who doesn’t have KTS. I’ve learned to take these changes and differences in stride and pay attention to warning signs. So yes, I am sure this is happening right now, and I do know what I have to do. Please don’t interrogate me on whether or not I’m about to have an episode. It could be a false alarm, but you don’t want to be stuck with me in the middle of nowhere if the real deal strikes.

7. KTS symptoms are sometimes embarrassing. Lymphoedema (swelling of the tissue, usually in the arms or legs) is one of the side effects of living with KTS and it can be a deeply embarrassing one. I’ve lost count of how often I’ve been in awkward situations because of it, and there is no delicate way of telling other people, either. There are times when I’ve had to choose between lying and being just plain rude to my friends as a result. I hate doing that, but it’s sometimes the fastest way I can leave.

8. It sometimes makes my anxiety worse. It’s not something I find easy to tell others, but I’m an anxious person. I think I would have had anxiety even if I didn’t have KTS. But, I have both, and when they team up, it’s not a great party. Most of the time, the anxiety I have is connected to having an episode when I’m far away from home, or having to deal with an embarrassing situation later in the day. But sometimes the anxiety is on another level — being afraid no one will like me for who I am, or worrying that I’m a burden on my friends. It’s not rational. It’s not easy. It takes a lot of love and patience, at the very least, from me. And sometimes, even that is not enough and I just have to wait until I feel better.

9. I will most likely never have a “regular” body. Lower limb hypertrophy and lymphoedema pretty much guarantee that my BMI is screwed no matter how much I exercise or how healthily I eat. I know and accept this, but I still feel nervous going in for a check-up. Even if my doctor is lovely, chances are I will be freaking out about having the “you need to lose a few pounds” conversation.

10. Most of the time, I will be able to keep up, but that doesn’t mean that I’m “faking it.” I’ve gotten really active these last few years. I run, I do martial arts, I cycle. Most of the time, I am able to keep up with my friends. I sometimes even run circles around them. That doesn’t mean my bad days are not real, though, or that I am “faking it” when my body just shuts down. The truth is I don’t know whether I’m going to have a good day or a bad one.

I just hope things will go well regardless, and people will have compassion.

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Originally published: June 11, 2018
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