I am 19 and have recently been diagnosed with HNPP. It has already started to affect me in life-changing ways as it has done for many to varying degrees.

Noticing that I was different and discovering pain when writing or baking for example, wasn’t a normal thing and was a tough obstacle to overcome. When I realised I needed to stop going to the gym because it was causing problems with my hands it was a tough pill to swallow because all of my mates were going and getting fit but, realistically, it was a bad idea for me.

When I left school, rather than go to university, I had a go at plumbing and landscape gardening. I really enjoyed doing both, but my body wasn’t happy (not just because I have HNPP, but also because I’m very allergic to common plants and to some of the materials I was working with).

I tried taking precautions and making sure I gave my body opportunities to recover and was able to carry on to some degree, but eventually had to stop because my hand stopped working for a while and I had periodic episodes of numbness across my body. I had planned to go into property development, but I’ve had to rethink my future.

I’m not undertaking this epic walk without thinking through the potential long-term dangers. I have had many discussions with consultants and have devised a strategy of rest breaks/rest days and gained a greater knowledge of signs of unseen damage so that I’ll know when or if I need to consider abandoning my expedition.

I would appreciate it if you could all get behind me on this. My aim is to get this mostly invisible, under-represented illness recognised. And to encourage people to be more aware of the effects of invisible illnesses and to encourage people to help and support, even champion, people who are suffering. Money raised will go towards funding the walk and  Dr Jun Li’s research where he is so actively involved in helping and supporting people with this horrible condition.

I will be keeping a diary, monitoring the effects on my body, and sharing my experiences with his team so that he can get a better picture of the effects of long term exercise.