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Barney Lee
Добавлен 2 май 2018
I am walking the entire coast of mainland Britain to raise awareness of HNPP (Hereditary Neuropathy with liability to Pressure Palsies)and raise money for research into this condition that is currently incurable, untreatable, and under diagnosed.
When I started walking I was 19, I'm 20 now.
I was diagnosed in the Spring of 2019 but I already knew I had HNPP because it had already started to affect me in life-changing ways as it has done for many people to varying degrees. I hope you'll follow my progress and help me to raise awareness and fund research into a cure.
When I started walking I was 19, I'm 20 now.
I was diagnosed in the Spring of 2019 but I already knew I had HNPP because it had already started to affect me in life-changing ways as it has done for many people to varying degrees. I hope you'll follow my progress and help me to raise awareness and fund research into a cure.
Barney Lee Interview Radio Wales December 2019
Short interview with Radio Wales about My Long Walk Around Britain or HNPP. If you'd like to know more or support me, this is where you'll find links to everything barneylee.co.uk
Просмотров: 146
Видео
Day 41 My Long Walk for HNPP: Recuperating in Hastings
Просмотров 1645 лет назад
Met some lovely people, climbed lots of hills...then listened to my body and took time to recover from a virus. barneylee.co.uk
My Long Walk Around Britain for HNPP - Radio Sussex
Просмотров 825 лет назад
Short interview with Radio Sussex while I was in Hastings. Glad to be achieving my aim of making more people aware of HNPP and raising money for research into a cure and treatment options. barneylee.co.uk
My Long Walk Around Britain for HNPP - Radio interview with Graham Torrington
Просмотров 1935 лет назад
Radio interview with Graham Torrington. This interview was syndicated to 7 radio stations, the message is getting out there. Big thank you to Radio Essex for telling him about me and what I'm doing. barneylee.co.uk
My Long Walk Around Britian For HNPP - Radio Kent Interview
Просмотров 1515 лет назад
My Long Walk Around Britian For HNPP - Radio Kent Interview with Steve N Allen - probably the funniest interview so far. barneylee.co.uk
My Long Walk Around Britain For HNPP- Interview with Steph Mack of Radio Suffolk
Просмотров 385 лет назад
A VERY long walk to raise awareness of HNPP and money for research into this incurable, ,untreatable, under diagnosed disease. barneylee.co.uk
My Long Walk Around Britain for HNPP. Radio interview with Scott Dalton of Radio Lincoln
Просмотров 405 лет назад
barneylee.co.uk My Long Walk Around Britain for HNPP.
DAY 4 - My Long Walk Around Britain for HNPP - Barney Lee
Просмотров 655 лет назад
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 ...
DAY 3 - My Long Walk Around Britain for HNPP - Barney Lee
Просмотров 995 лет назад
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 ...
DAY 2 - My Long Walk Around Britain for HNPP - Barney Lee
Просмотров 585 лет назад
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 ...
Barney Lee Live interview with Radio Derby 11-08-19
Просмотров 985 лет назад
Early morning interview with Radio Derby on Day 2 of My Long Walk around Britain
7 Days and Counting
Просмотров 605 лет назад
BarneyLee.co.uk My home for the next 15 months or so as I walk around the coast of mainland Great Britain to raise awareness of HNPP.
Barney Lee: My Long Walk Around Britain for HNPP
Просмотров 9555 лет назад
Barney Lee: My Long Walk Around Britain for HNPP
Hey, Barney. Thx for doing this. Do u have a link to Dr. John Lee? wasn´t able to google him. would like to read about his work to cure HNPP. Have been diagnosted 6 years ago. I´m Thankfully not in pain or with big troubles, but scared of being old with this..
If you don't stick to the path make sure you have a stick! I got stuck there too, i followed the becton bunny down to the shore, turned right and followed the edge back to the main beach. As i was coming round where the rocks are i stepped in what i thought looked like a clay puddle. I was up to my knees sinking and i was alone but luckily i had a stick with me. Using the stick and a method from a bear grylls episode i managed to get on my front and use the stick help me crawl out.
Can I ask how bad you ever got from HNPP ? Like can’t move at all or ?
I've had bad foot drop from it. I was dragging my leg along. My hands can become paralyzed to the point where I can't make them twitch. My arm can also become paralyzed and have done on occasions.
Barney Lee do you have pain ? My leg so pain, it have been 3 weeks now so pain and numbness
Wow thank you .. I was diagnosed with a HNPP mutation.. I don't know anyone with the same diagnosis as me.. my mum has HNPP .. good luck mate
Keep going Barney. You are amazing!! From kim geoff and Max.
would of loved to see you recording the coast guard helping you
Met at durdle door. Good luck!
Best wishes from Kim, Geoff and dog Max.
Love you Barn - good luck!
You'll find regular updates on my blog barneylee.co.uk/two-and-a-bit-weeks-to-go/