Man with rare condition walks through Dorset on country-wide trek

Man with rare condition walks through Dorset on country-wide trek

Published by Maria Greenwood at 9:23am 15th October 2019.

20-year-old Barney Lee has HNPP, a condition which leaves his feet numb, or prevents his arms from working without warning.

He's walking through Dorset as part of a longer walk around the country's coast, to raise awareness and money for the condition. 

Barney set off from Lincolnshire on the 10th of August and has made his way here. He estimates it will take him a year to complete the trip around the Great British Coast.

             

'What is HNPP?'

HNPP stands for Hereditary Neuropathy with Pressure Palsies. It can effect people in different ways but typically symptoms include:

  • numbness, tingling, muscle weakness
  • pain in the limbs
  • loss of sensation in the hand (similar to carpal tunnel syndrome)
  • muscle weakness, making it difficult to lift the front part of the foot (foot drop) or the wrist (wrist drop)
Barney Lee

Barney was 16 when he first started getting symptoms, but he was only diagnosed 9 months ago. He said:

"I was a plumber and a landscape gardener but I had to give that up because I kept having paralysed hands. I had muscle weakness in my hands to the point where I'd start dropping things. 

"When you're grouting or tiling or carrying or digging, having your hands stop working and dropping your implements isn't great.

"When I slept in my tent I'd wake up in the morning, my hands would be paralysed, my arms are numb and then they'd remain weak fro the rest of the day and into the next day."

barney lee walks on dorset coast

He says on one occasion on the walk, the muscle in his leg to lift his foot stopped working and he had to hobble for the day.

"People probably thought 'oh there's another drunk on the street' or something, but no I was just struggling with my body."

There is currently no treatment for HNPP and no cure available.

Barney wants to raise money and awareness for the condition.

If you'd like to find out more about Barney's trip, or donate to his cause, got to his website.