Hi everyone, my name is Niah Selway and I am a 23 year old woman from the UK. I suffer with a rare skin condition called Aquagenic Pruritus, which means I have allergic reactions when water comes into contact with my skin.
My skin itches for hours after I come into contact with any form of water including rain, sweat, tears, urine etc. I wasn’t born with this condition, but it became worse through my teenage years, as I went through puberty. I started to have allergic reactions to my showers, which became more and more frequent as time passed. My doctors put it down to a change in my hormones, but after many attempted treatments to lessen my symptoms, they soon decided that my skin condition was likely incurable, as I had responded to nothing they had tried and they couldn’t find a specific cause for why this started happening to me.
My allergic reactions feel like an intense itching, burning sensation, which can’t be soothed by anything. They can last up to 3 hours after the initial contact with water, which makes bathing and caring for myself in general an ongoing challenge, because I so frequently have allergic reactions and am left in such excruciating pain. If I itch my skin, it doesn’t give me any relief, to moisturise it doesn’t help and antihistamines, painkillers and all of the treatments my doctors at St Thomas’ Hospital have tried didn’t have any impact on my symptoms either.
So far, my treatment has been entirely provided by the NHS, which I am so eternally grateful for. I am, however, reaching the pointwhere they have exhausted their treatment options for my situation and quite honestly, it doesn’t feel like they have much belief that they can help me. I have a number of tests and routes I want to explore which remain unexplored despite asking my current doctors to investigate, which I believe will be looked at more closely and regularly by the private clinic I have in mind, who specialise in treatment for Pruritic conditions of the skin.
As of today (22/03/2021) I have been accepted into the Pruritus Clinic for private treatment in Germany. As you can imagine, I am so happy and feel so extremely lucky that they think it’s worth their time.
The initial cost for my first appointment is €800, which I’m guessing will include the cost for the testing and diagnosis process for them to actually confirm that my current diagnosis is correct. From there, they will offer treatment and/or further appointments for testing, which will increase the costs as it goes, depending on what they can offer me. This leaves me in a difficult situation, because I have no idea how much this entire process may cost. I can’t imagine how much money I would’vehad to have saved or raised if I had needed to pay for the past 5 years of my NHS treatment and I also have no idea how longmy journey with the new, private clinic will last. I’m also conscious that the clinic isin Germany, which I’m guessing will result in many trips to and from there, which will cost in flights, accommodation and living costs when I’m there.
As you know, I had to leave my full time employment a few years back, because of the frequency and intensity of my allergic reactions. This has left me in a difficult position financially. I don’t earn reliable income from YouTube which has left me with no other option but to ask my followers for help!
I know it’s a lot to ask, but literally any small donation helps me get just a few steps closer to a normal life. If I can just halve the allergic reactions I have daily currently, my life will be improved. Thank you so much for reading this far.
* Since my diagnosis of Aquagenic Pruritus, I have documented my entire journey on my YouTube channel, where I share what life is like with this condition.
You can find more information on my skin condition here - https://youtube.com/playlist?list=PL7IymiJ0_rk3lXrMn5LHDhJO5f3HZcIS0 *