So, what is
Aquagenic Pruritus?
Aquagenic Pruritus is a rare skin condition, where the sufferer will experience painful allergic reactions, consisting of intense itching & burning of the skin.
This reaction usually occurs without any visible skin changes, even after contact with water of any temperature.
So, why does Niah need to
raise funds?
I’ve been accepted into the University of Munster “Pruritus Clinic’ for private treatment in Germany.
The initial cost for the first appointment was €800, with each appointment thereafter being billed separately, on a pay-as-you-go basis. This has left myself and my family in a difficult situation, because no-one has any idea how much this entire process may cost.
I have undergone over 6 years of. unsuccessful treatment at no upfront cost, under the NHS, but has unfortunately now exhausted all U.K available treatments for this condition, leaving me with no other choice but to seek private treatment elsewhere.
After 6+ years of treatment and tests, my symptoms are now more debilitating than ever before. There’s no way of knowing how long my journey with the new, private clinic will last, with a huge concern being that the clinic is in Germany, which will result in many trips back and forth for treatment, which will accumulate additional costs for flights, accommodation and living or ward costs.
The fundraising target originally started at £10,000 because it was an early estimate before attending the first consultation. I was never given any kind of estimate of what private medical treatment may cost, but after attending the first appointment on the 6th May, I have since come to the realisation that the cost of this first trip was simply for the initial consultation. At the appointment, the doctors told me that they have a number of tests they would like to run, as they are concerned that the itching could be being caused by an array of rare blood diseases, such as Polycythemia Vera or the hepatitis C virus. On the other hand, it could be something as simple as an intolerance or allergy which they believe they would have a fairly good chance of treating. Of course, they will not know for sure until they are able to run the tests they have planned and come to a more conclusive decision on what my treatment plan will be moving forward based on what they find to be causing the ‘allergic reactions’ or itch.
The Treatment Diaries: My First Trip to Germany
I had to leave full time employment a few years back, because of the frequency and intensity of the allergic reactions. This has left me in an incredibly difficult position, financially. I do not yet earn reliable income from YouTube which has left me with no other option but to ask for help publicly to fund this treatment.
The success of the treatment is not promised, with the aim being to just halve the allergic reactions and therefore, the pain that I endure daily.
I am now back in the UK, with the first trip having cost way more than initially expected because of travelling during the pandemic.
The doctors couldn’t tell me how much this entire journey may cost, but they did advise that this would be an extremely expensive journey to embark on and the fundraisers should be prepared for the costs to be open-ended. For me, this was a terrifying realisation, accepting that I may not be able to be treated at this specialist clinic in Germany without raising more funds to help me to be able to get further than the first few appointments.
The cost of the second appointment is estimated at €6,200, which is simply the cost of the testing and diagnosis process. I will then be billed separately for all future appointments.
* Since receiving the diagnosis of Aquagenic Pruritus, I have documented my entire journey on YouTube, where I share what life is like with this condition.