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.