Media

What am I doing?

I am walking the entire coast of mainland Great Britain to raise awareness of and to raise funds for research into a cure for HNPP (Hereditary Neuropathy with Liability to Pressure Palsies).

This is an incurable, untreatable, debilitating life-changing condition which is often misdiagnosed. It is thought that rather being rare it may actually affect 1/2500 people, many of them undiagnosed because so few doctors know about it!

I set off from Mablethorpe on August 10th with the aim of being the youngest person ever (I was 19 when I started) to walk around the coastline of mainland Great Britain. This is the equivalent of walking from the UK to India, a distance of over 6,500 miles.

Dr Jun Li at Wayne State University is doing cutting edge research into the condition and looking at ways of reducing its impact on people’s lives. Money raised will go towards funding Dr Jun Li’s research.

He is actively involved in helping and supporting people with this debilitating condition and needs financial support to fund clinical trials and continue research into a cure and effective treatment options to alleviate symptoms.

Who Am I?

My name is Barney Lee. I was diagnosed with HNPP when I was 19. It has already started to affect me in life-changing ways as it has done for many to varying degrees. HNPP affects the peripheral nerves—pressure on the nerves can cause tingling sensations, numbness, pain, weakness, muscle atrophy, and paralysis of affected areas for anywhere from a few minutes to a year or much longer.

My first symptoms began with experiencing pain whilst gripping and writing for prolonged periods, discovering that this was not normal came as a shock. Symptoms have already escalated to periodic episodes of numbness in different parts of my body when cooking, doing manual labour, exercising at the gym, or even sleeping!I’ve had to lay down my dreams and completely rethink future career choices because of the effects of this slowly disabling condition.

Realizing that I was different and discovering that being in pain when doing simple things like writing, cooking, or gripping things wasn’t a normal thing was a hard thing to overcome.

When I realized I needed to stop going to the gym because it was causing problems with my hands it was a tough pill to swallow—my mates were getting fit but going to the gym was damaging my body.

 

When I left school, rather than go to university, I started to learn 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 for a while I was able to carry on to some degree, but eventually had to stop because my hand stopped working for a while and I was having periodic episodes of numbness across my body.

I had planned to go into property development, but I’ve had to completely rethink my future.

Why have I embarked on such a long walk?

My aim in undertaking this long walk is to get as much publicity as possible so that this mostly invisible, under-represented illness will be more easily recognized.

And to encourage people to be more aware of the effects of invisible illnesses and encourage them to help and support, even champion, people who are suffering with an invisible illness that severely impairs quality of life.

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.

How did I prepare for this walk?

I have completed Bronze, Silver, and Gold Duke of Edinburgh which has given me vital navigational, hiking, perseverance, and camp work skills.

I have also climbed the tallest mountains in England, Scotland, Wales, Ireland and Northern Ireland. I have also walked in the Peak District.

I’m an avid watcher of survival programs and documentaries; Bear Grylls is an inspiration to me.

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 if I need to consider abandoning my expedition. I’m not undertaking this very long walk without thinking through the potential long-term dangers.

I also spent time investigating the best tools and equipment to use, and reached out to ask people to connect me with people who live on the coast who might be willing to put me up for a night.

I have also been requesting sponsorship from people I know and people in Facebook groups who also suffer from this condition.

I created a Facebook Page, and Instagram Page and a YouTube Channel so that people can follow my progress and easily share what I’m doing.

What do I organize where I stay?

It’s very hit and miss 🙂 I plan the route then post a list of dates and places where I need help with accommodation. People share on Facebook and on local message boards and ask friends directly. That usually results in lots of amazing offers through a message on my Facebook page.

I also get offers of accommodation from people I meet as I’m walking along or eating in a cafe!! So far (Jan 2020) I’ve only camped 8 times. I’ve stayed in hotels around 5 times, and each time somebody has covered the cost for me.

Check my Itinerary

How long will it take me to complete the challenge?

This is a difficult one to answer. The honest answer is I don’t know, it will take as long as it takes. It depends on how my body copes with the walking for weeks on end, how many rest days I need, the weather, and potential injuries that may arise. A rough estimate would be 14 months but I really don’t know. I have no set end date.

How does my condition make me feel when it is at its worst?

Powerless, weak, and frustrated. Having to alter what you want to do in life because of a medical condition isn’t fair! I had planned to become an all-round handyman so I could fix up every element of a house from the garden to the heating system. I was planning to start my property portfolio and be a one man band for flipping houses. Sadly, that’s no longer a possibility because it’s obvious that my body can’t hack it.

I vividly remember waking up one morning to go to work only to discover that my hands weren’t working. I tried to move them and couldn’t seem to make them do anything. It felt like I had 10 pairs of woolly gloves on my hands, as though my hands were just stumps. That made doing anything with my hands extremely difficult.  I tried to turn off my alarm but couldn’t.

It was 10 minutes before my hands began to work enough to use them a bit. They were so weak that it was difficult to grip anything and I had a hard day of labour ahead.

I also woke up with an allergic reaction that affected all of my face. I’m extremely allergic to common plants. I’m guessing that particles must have travelled through the air to my pillow and caused a bad reaction while I slept. I now take immune suppressants to limit occurrences like that.

I sometimes feel angry that I have HNPP and that there’s nothing I can do to help myself because there is no treatment, no cure, and very little support.

HNPP can really limit your quality of life. Compared to some people I have got off lightly so far, there are many people who are much worse off than me.

I want to spread awareness because there are a lot of people who have this condition but haven’t had a diagnosis and don’t know what’s wrong or how to help themselves.

If you’ve never known anything else you think it’s normal to have your body go numb, have muscle weakness, and shocking grip, and physical activity causing you pain. You keep pushing through and end up doing long term damage which can end up making you really disabled.

Most Doctors haven’t heard of this condition and often misdiagnose it, or put the symptoms down to being in the patient’s head. Sadly, it’s very real and impacts people all over the world.

My hope is to get as much publicity as possible to spread awareness of this debilitating condition.

I hope you will consider running this story and laying the foundation for contact with more mainstream media to help me raise awareness so that:

  • I can connect with more people who are willing to sponsor me on this walk and give towards Dr Li’s research.
  • More people will be aware and consider giving me a bed for the night as I undertake this epic walk.

Thank you so much for taking the time to read this page, I really do appreciate it.

Contact Me

Find ways to contact and support my walk