DAILY LIVING & MOBILITY

Embrace It with Klippel-Trenaunay Syndrome (KTS)

Rare Disease & Syndrome

Georgie Phillips

Klipp- what?

Klippel-Trenaunay Syndrome (KTS) is a rare condition I was born with as a result of a mutation whilst a developing embryo. It means that people with it have venous malformation of an area of the body- it could be on their face, legs, arms, torso... For me, it affects predominantly my right leg. I have lots more veins in my right leg, and many of them don’t work properly- leading to swelling. Doctors say because I had more veins on my right side my bones grew more- leading to a leg discrepancy.

My arms are also different in length, and my right side is always warmer- meaning my left side can feel very cold! I always seem to be the first to get too hot or cold. I sometimes walk with a limp, especially when I’m tired! Or when my leg just doesn’t want to play ball. For some people, they have port wine stains, I don’t have any very noticeable birth marks on first glance, but my skin on my right side is darker/more veiny (from shoulders down) and you can especially see this in the heat.

The downside of Klippel-Trenaunay Syndrome (KTS)

We are at a heightened risk of blood clots, usually develop lymphoedema (extra swelling-yay!) and are more susceptible to skin infections on the affected limb. I’d also add to that that we get tired, we have a heavier than usual limb/s to lug around and our circulation isn’t great- our bodies have to work harder to maintain normality.

A few numbers

With any disfigurement often comes anxiety and depression. As the charity @changingfacesuk stated in study findings; only 3 in 10 young people said they would like to be friends with somebody who has a visible difference. So you can see why it can be mentally tough having KTS. The amount of people who haven’t heard of Klippel-Trenaunay Syndrome is very high, mainly because it is so rare. @greatormondst states that it affects every 1 in 20-40k children! I’d say, if I do come across doctors who have seen KTS before I am surprised! Most medical professionals have to do a quick Google of it before they see me!

Self Esteem and Confidence

Living with a visible difference can be a challenge. Especially for me when I was going through my teenage years. Social media hadn't really taken off and there wasn’t much diversity in the people I saw in media. There is always an underlying pressure to look perfect. As a teenager, I was frustrated that my leg didn’t look like everyone else’s. My condition can’t be “fixed” and it won’t “get better.” Every outfit I wore depended on how my leg would look with it. I would only wear certain neutral/shimmery colors on my toes because I didn’t want to draw attention to them on holiday. I’d never wear colorful socks if you saw them above my shoes, I would only buy black shoes so nothing would draw attention to my leg.  I refused to go on nights out showing my leg off. I did not want to draw attention to it. I would never wear shorts in public (unless I was sunbathing on a beach - oh the dreaded beach walk- the awkwardness and the stares I felt) And worst of all, if I were to have my legs showing I would never ever have my stocking on - that was a massive no-no. So sometimes I would go a whole evening not wearing compression because of how I hated it looking different and my poor leg would ache afterward.

Exercise is the best painkiller

Pain management resulting from all those silly veins is also a struggle for many too as many painkillers don’t work. However, I’ve re-discovered the gym and I’ve found out that exercise is the best painkiller for me and also gives me a positive buzz. I am currently training for a 10k run - we will all be dressed up as Santas- in December to raise money for Great Ormond Street Hospital. This is giving me a sense of purpose and most importantly I’m raising money for a charity which has helped me and my KTS.

Other active things I like to do is paddle board and surf. I love to be in the sea, so whenever I am by the coast I’ll try and do that. Swimming is also great exercise - the doctors always recommend I do it- because water acts as a natural compression for my leg and it's not hard on the joints.

Accepting my body

Now, I am getting comfortable in my own skin. Starting my blog on Instagram @elknacc has been a very significant part of accepting my body. For the first 6 months of having the blog, I was a different person- the thought of even taking a photo of my KTS foot and putting it online made me anxious. But I wanted to share my experience in hope to help others. Having my blog has enabled me to connect with people across the world who also have KTS, raising awareness of this rare condition and also building up my confidence and self-esteem. 
I only have one body so I’ve got to take care of it- and that means mentally too- positive thoughts about your body go a long way!  It’s taken off a massive pressure I used to put on myself to look “perfect”.

Getting out of my comfort zone

I think travelling -throwing myself into new surroundings- really helped shift my mindset about my body. Exploring 3 new countries in 2 months was an amazing adventure.   Learning about different cultures and their history required having an open mind. Whilst meeting new people everyday and forming friendships increased my confidence in engaging with people. If people asked about my leg (and they did- a lot!), I would simply say "I was born with it", and a conversation would flow that way. I was also outside my comfort zone trying new things like mountain biking, trekking up mountains and activities such as swimming in the sea where there were stingrays. 
Because of the busy schedule and nature of the activities it was so so important that I looked after myself and my leg, other wise there would be consequences: leg infections and fatigue!  Social media has also helped too as I am following other people's journeys with differences; which inspire me.
My goal is that people with medical conditions and insecurities will see my journey of acceptance and be inspired to be a bit more comfortable in their own skin. It takes time and it’s not easy breaking habits of a negative mindset about your insecurity, but it’s worth pushing through.

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