00:04I'm Sarah Burford, I'm 34, I'm a personal trainer and I've got
00:08Harlequin Syndrome. Approximately eight years ago I had chest pain so it
00:13was more sort of like around the rib area. I went in to the doctor and they
00:18said okay they want to investigate. It turns out it was nothing linked to the
00:22ribs at all, that's actually a separate condition called costochondritis but
00:26they did find a lump which was a rare tumour called ganglioneuroma and that
00:32was in the inside of my chest wall on the left side. So in order to remove the
00:36tumour they had to remove the sympathetic chain which is effectively like the sweat
00:41glands leaving me with Harlequin Syndrome. Well it was really strange because I
00:46remember so I had the operation, went back home as normal, yep you're fine you're all
00:50here all sort of scenario but I had to go back every six months for just a chest
00:54x-ray just to make sure it hadn't come back and everything was okay. So in that
00:59time obviously I've just been trained and it's normal and when it gets really hot
01:02that's when I notice it more so I tend to just train and then started to discover
01:07this and was confused what's going on what is that condition what's happened to
01:11my face and then that's when I went back and they told me. It's uncomfortable
01:16there's definitely times where I almost wish I didn't obviously have it but then I
01:22look at it as a positive and go well it's a little bit different but unique.
01:26Some clients that I go running with they are aware of it because they've seen it
01:29obviously in action I've told people about it again I'm not ashamed of it it's
01:34just it's it is what it is it's the condition that I'm left with and like I
01:38say my class is a bit different but everyone just finds it quite interesting
01:41more than anything else they don't sort of say oh that's strange or you know
01:47calling me anything so that's good it's positive but they just sort of almost
01:51feel possibly sorry for me in a sense but certainly haven't had any negative
01:55sort of comments regarding it. I now find it more preferable just training like
02:00outside so either at my home or I train clients in the comfort of their home or an
02:05outdoor location I find it's sort of better for the mindset as well and you can
02:11just kind of focus on you a little bit more and concentrate on your workouts and I
02:15remember it was around the time obviously they were all close to me and did
02:19support me sort of through the operation and obviously the healing process and then
02:23I wasn't originally informed about the condition so until possibly six months or
02:29so afterwards when I sort of discovered it myself and then I was told what
02:32happened but the support was there and then I obviously informed them what I
02:36found out myself. If it's really really hot day and I have worked out as well then
02:41obviously it's uncomfortable more than anything like you feel like you're
02:44obviously just the one side of your face is completely burning but actually then I
02:48sort of almost put my hand across onto the other side and cool it down almost
02:51because this is still freezing cold whilst this is hot and sweaty. I haven't met
02:55anybody else with the condition I'm sure there is well there are right there but I
03:00haven't met them. It would be interesting to sort of see how other people react
03:04with it whether they still exercise and like I said I've always been into my
03:08training so it wasn't going to be something that I would stop or reduce so I
03:12would continue as normal with with that but it'd be interesting to see if anybody
03:16else with you know how they react to it and what they do definitely.
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