Hi, my name is Nadia.

Thank you very much for visiting my fundraising page! This would really help to pay for the bills we are experiencing trying to get help with my health issues at the moment. I was diagnosed with Small Fiber Neuropathy in October based on my symptoms. This has been really difficult for a few reasons including financially and would greatly appreciate help from others if you can and want to!

It is a serious neuromuscular disease which is progressive and degenerative if left untreated - which most cases are in the UK as there are no treatment pathways set up for us. Worst cases can leave people in wheelchairs, with severe autonomic dysfunction, bedbound and/ or suffering from premature death from secondary organ complications.

At the moment we are focusing on getting specialised help, further testing, maintenance and getting things in motion for potential treatment. Mine seems to be progressing aggressively unfortunately (also indicates immune dysfunction) and I need appropriate medical help asap but it's been snail slow to get anywhere. Life is hard at the moment but we are trying our best and learning hope!

Immediate costs (short to medium term focus)

At the moment we are spending costs on consultant appointments, tests to have more clinical proof of the diagnosis (which was made on symptoms) and rarer tests for trying to find the cause of SFN. These are all significant as many medical professionals have been dissmissive, unhelpful and even hostile - which means we've had to see a lot of consultants to get anywhere!

There are certain maintenance costs we are having from podiatry, physiotherapy, pain management and acupuncture to keep on top of my mobility issues/pain, autonomic dysfunction and nervous system regulation. We are doing as many of these on the NHS as we can but are still on waiting lists for everything atm (9 months for an urgent neurology appointment for example).

However, we are finally getting somewhere productive with the consultants :) Next steps are further tests to find the cause. Some of these are specialised and have to be sent abroad. To get treatment, we need evidence of an auto immune condition or immune dysfunction.

Long term costs (long term focus)

We also have future long term costs we are considering for the potential for private IVIG treatment. This step is after further tests are carried out to find evidence of immune dysfunction.

If we need to pay for IVIG privately for a year which is possible if and when we get this approved, it would be substantial and would benefit a lot from some donations from others! Thid id part of why the figure is so high. If you want to and can donate for this, that would be so helpful! Thank you!