My skin journey has come to an end. The tests, stress and mental effects over a period of a year came to an abrupt end. But what caused my journey to end?
If you’ve been reading my skin journey articles, Skin: My Journey, Skin: Salvation #AD and Skin: Ferguson Smith Syndrome you’ll fully appreciate the issues I’ve had. Our skin is such a complex part of our body and one that is susceptible to a whole load of problems.
I’ve always had dry skin, ever since I can remember, but the issues I’ve had over the past few years were worrying, to say the least.
It is believed that I now have a rare skin condition called Ferguson Smith Syndrome. A very rare genetic skin condition, that produces cancerous like lesions. The good part is, I now know that these can’t metastasis internally. However, the lesions can develop into squamous cell carcinomas. I fully understand my ‘possible’ condition now, through my own research and basic research carried out by professionals at a later stage in the testing.
At the very beginning, when I first started getting these lesions it was very quickly identified as ‘just folliculitis’, a week’s worth of antibiotics and I’ll be fine. I wasn’t listened to when I told my GPs multiple times that I didn’t believe it was just folliculitis, I knew it was something a little more sinister. So over a course of 4 years, I was left with pitted scars on my face and body.
It wasn’t until, early 2020 that I had what was thought to be a cancerous tumour on my lip. The consultant quickly identified the lump as non-cancerous, but noticed my scarring and said “do you have Ferguson Smith Syndrome?”, I replied, “I have no idea what that is”.
By pure chance, the same dermatological consultant had came across the condition only once before, many years prior. And so began the testing for Ferguson Smith Syndrome.
The genetic testing was halted because I didn’t have Aortic Aneurism. One of the prerequisites to following through with genome testing. I was deeply disappointed with this and made an appointment to discuss further, my options and how I manage this condition moving forward.
It all boils down to money. As with most things. Don’t get me wrong I don’t expect the NHS to be able to fund everything. But at the time, I half expected enough of an interest to push through testing to better understand this rare condition.
After a lengthy discussion, it became apparent that I would definitely not be getting any more testing through the NHS. Although disappointed and felt like a kick in the nuts, I fully appreciate the reasoning. That decision, although sounds harsh make perfect sense and I’m fully supportive of it.
My condition, thankfully, isn’t life-threatening. The management of my condition is pretty simple. I discover a lesion, it gets removed under the 2-week rule and I continue to protect my skin from UV rays and harsh chemicals. There is limited research into Ferguson Smith Syndrome, but ‘they’ do know it’s not life-threatening.
On the flip side, people with terminal cancer is on the rise. I can just get my lump removed. A lot of people can’t and sadly leads to loss. More research and funding should be prioritised towards life-threatening conditions.
In essence, this is why my genetic testing was stopped. Very disappointing but at the same time fully understandable. I’ll never know if I have Ferguson Smith Syndrome. The consultants are convinced I have. My options moving forward are; to fund the genetic testing myself or I could go down the route of discussing my condition with skin research charities and the like. To see if they could offer genetic testing as part of the research.
But for now, I’ve been diagnosed with ‘possible Ferguson Smith Syndrome’. I do feel as though I’ve gone through a few years of pain, ugly lesions and mental torcher to simply end up back at square one.
I’m still very keen to speak to skin researchers just so I can get a confirmed diagnosis to give me some form of closure. But, I would much rather have multiple scars than prevent the NHS from carrying out vital research into saving lives and beating cancer.
So, for now, this is my skin Journeys end.