29:17 it is good to hear Alex talk. I have had peripheral neuropathy for many years and have recently been diagnosed with HNPP. Most of what I have read is American, and it is interesting to hear about the uk. Thankfully the neurologist I have now is resurching this, I am looking forward to seeing him soon because I have so many questions. I agree that the normal gp really does not understand, I also have a vestibular disorder and it is the same with that. It does affect the quality of life, because we look ok! But feel rubbish! Making people aware of these disabilities is important.
I have hnpp too , I can understand her now I have my right arm paralyzed for a month.. I’m very depressed because I can do my stuff normally and it doesn't seem to be recovering and I'm very worried now
Thank you for sharing your story, and thanks to the team for making the video and raising awareness. I have HNPP along with at least 2 of my 4 children. I have trained with weights on and off since 14 (I'm 52 now). I make gains and then become injured, also the bars affected my hand nerve pain and I kept dropping things. I've recently switched to bands and started a fitness channel to document mine, and my wife's workouts @MarkandJu
Alex is a doll and very very well spoken. Every single thing she said applied to me.
29:17 it is good to hear Alex talk. I have had peripheral neuropathy for many years and have recently been diagnosed with HNPP. Most of what I have read is American, and it is interesting to hear about the uk. Thankfully the neurologist I have now is resurching this, I am looking forward to seeing him soon because I have so many questions. I agree that the normal gp really does not understand, I also have a vestibular disorder and it is the same with that. It does affect the quality of life, because we look ok! But feel rubbish! Making people aware of these disabilities is important.
I have hnpp too , I can understand her now I have my right arm paralyzed for a month.. I’m very depressed because I can do my stuff normally and it doesn't seem to be recovering and I'm very worried now
Look up Niacin as a therapy for HNPP. Additionally, rapamycin and even neuroactive steroids.
Jackson Helen Perez Margaret Martin Barbara
Thank you for sharing your story, and thanks to the team for making the video and raising awareness.
I have HNPP along with at least 2 of my 4 children. I have trained with weights on and off since 14 (I'm 52 now). I make gains and then become injured, also the bars affected my hand nerve pain and I kept dropping things. I've recently switched to bands and started a fitness channel to document mine, and my wife's workouts @MarkandJu
Martin Shirley Hall Laura Allen Melissa