HNPP which is Hereditary neuropathy pressure palsy

firegem71

Hi everyone, I am new to this site. I have HNPP which is Hereditary neuropathy pressure palsy. Last year I had my high rate motability taken from me as I changed to PIP. I didn't appeal at the time because I lost my mum and I had no fight in me. A year on and I am going to try for enhanced Motability as my condition has got worse and every day in a struggle but I'm finding it to hard to try and hide the fact that my independence is going and I feel so frustrated.

MikeBroderick

Hi @firegem71.

Welcome to the Scope Online Community.

My condolences on the loss of your Mum. My parents died a couple of years back so I know how difficult it is.

I also know that sense of frustration when things get more difficult generally.

In terms of questions around PIP or higher rate mobility, have a look at our Benefits Overview. And you can ask specific questions to a Benefits Advisor.

You'll also find great discussions about all sorts of disability-related issues throughout the community.

Thanks for coming aboard.

Sam_Alumni

i @firegem71 it knocks the fight out of you doesnt it.   

If you are going to apply again, do take a look at the CAB advice on filling in your PIP form, it takes it question by question and give a lot of great advice.

Keep in touch and ask any questions you need to! 

firegem71

Hi sorry it's been a while, a lot of progress in the last few months. Got the enhanced PIP mobility which is great news. Thank you for your comments ( yes a long time replying sorry ) finding things are getting more difficult but will always fight it, yes some days it gets me down but don't give up. Now waiting to find out if my youngest daughter has HNPP. She has a few signs but without the genetics test I'm not sure. I have never told any of my daughters exactly what and where the pain is as did not want them saying they have the same ( not that they would of done ) but something's we take for granted, trying to explain to my girls was hard. But as I say I'm disabled not dead and I will do what I can and if I can't that's when I will ask for help. Lovely chatting.

Cazann

@firegem71. I was just reading your post from May.  How are you getting on with your HNPP.  Did you find out if your daughters have it? I have HNPP and so has my sister. I think that my son and his son have it too but they do not want to be diagnosed yet. It is a very unusual disease, as it has many different symptoms.. I have numbness in my fingers,hands and feet and sometimes part of my scalp goes numb.  I also have some severe pains in my hands and legs. I'm at the moment in the process of appealing PIP. I've been turned down three times and now going to tribunal.  I was on higher rate mobility for 13 years before I had to claim PIP. I can't see how they can turn someone down with a disability that's not getting better!

I am pleased that you have got the enhanced PIP mobility and I hope that you and your daughters are well.

Take care.

Cazann