Hidradenitis supporativa and pip

hannah9229

@SueHeath @Tori_Scope
I received the decision letter via post this morning. It’s such a relief and a big weight lifted off my shoulders. 

Tori_Scope

Great news @hannah9229  

Roofydoof_2012

hannah9229 said:

@beth12 thank you for commenting as in the 13 months going through this process, you are the only person I have heard of claiming for this skin condition. I can’t take photos of mine because it’s to inappropriate. Mine effects private areas of my body. I have had this condition since a teenager but was only diagnosed at 18 after having phototherapy to clear my skin from eczema. I am now 30 and it’s become harder to manage. I have submitted medical reports as evidence. Your comment has given me some hope so thank you.  

Hi Hannah and Beth 

You are most certainly not alone. I have only recently been diagnosed after having the condition since I was a teen and I'm 50 now and still suffer. I have had flare ups that have had to have surgery and 10 week follow on care with packing and daily dressing changes and completely agree with how it affects your mental health as I have been on anti depressants for many years due to how it affects me. I very rarely leave the house either and it has definitely had a massive impact on my ability to work long-term as I've lost more jobs cos of having to take time off sick to recover after surgery. Not to mention the embarrassment of where they decide to flare up. I'm so pleased your award was granted. I wish I had known about it a lot sooner because it's not an illness that you can plan around financially. Take care x

Lou67

@hannah9229

Aww so pleased to read your news, a big weight off your mind.
Also your backpay will help you loads.
You can relax at last.

Take care ❤️

Loretta167

I have 2 friends with HS, one is constant flare-ups with a quality of life index of 15, and she got zero points the other friend does not have much bother at all with HS and got awarded Standard care. There really does not seem to be a fair process it is more as if the assessor and decision-maker are feeling generous lol 

nasturtium

Loretta167 said:

I have 2 friends with HS, one is constant flare-ups with a quality of life index of 15, and she got zero points the other friend does not have much bother at all with HS and got awarded Standard care. There really does not seem to be a fair process it is more as if the assessor and decision-maker are feeling generous lol 

Hello Loretta167

It is not the diagnosis or condition that get you an award for PIP it is how that condition affects your ability to complete the 12 PIP activities "reliably" according to the descriptors.

So two people can have the same condition but the condition effects one person more than the other so they have more of a chance of getting an award.

It is what you put down on your PIP2 application form that dictates if you are elegable for a PIP award or not.

Before a person starts a claim for PIP they should research the activities and the descriptors to see if they qualify for an award.

Nasturtium

mary88louise

Hi hannah9229 i am currently attempting to claim PIP due to how hidradenitis suppurativa effects my day to day life too. the forms will be sent to me soon any advice on how to fill them in so i dont have the same struggles you did would be greatly appreciated, thanks 

nasturtium

Hello mary88louise

I have written a detailed reply on another post that you might find helpful https://forum.scope.org.uk/discussion/comment/680205/#Comment_680205

Piejones

@hannah9229 and @beth12 are you still receiving PIP for your HS?. I have a medical examination on Tuesday.

Albus_Scope

Heya @Piejones and welcome! Unfortunately this is a post from early 2023, so I'm unsure if you'll receive a reply.  Not a problem as sometimes dates don't show up properly! 
Did you need any support for your PIP assessment? We're all here if you do.

nadey25

I suffer with HD

It’s not just a skin condition people need to be educated about this it’s causes abscesses and boils under the armpit and the groin other places but I suffer with them under the armpit mine get that big the skin around it becomes tight and all inflamed I can’t even lift my arms to bath nor pick my young sons up or even do simple house chores I get them every month and they last about 2/3 weeks so I get a weeks break which then mentally I don’t get a break there’s the scaring which is bad drain holes that don’t heal once they start to drain you smell vile it’s worse than a tooth decay infection if anyone has smelt that before the pressure and the tight pains go but the pain from the abscess is still there the infections can lead to sepsis also 50% more chance off them turning into cancer than normal people without the skin disease if they get to infection and inflamed the infection travels into the blood and the lym nodes into the sinus area you have to have full body scans every 6 months to a year depending on the stage you are at there is also no cure for it either and your life expectancy is shortened it’s worse if it’s threw genetic my poor grandad suffered with it and got abscess everywhere the got to inflamed they turned in a cell cancer which the travelled on to his spine to his legs and brain it’s not like eczema at all or even other skin condition HD has different stages and the abscess can form anywhere inside the body on organs and outside the body if then boils and abscess pop in the organs that’s straight away is a blood infection I don’t claim pip for it as it’s 3 weeks in a month I’m in agony and 2 weeks in a month we’re I can’t lift so it’s not constant at the moment it feels like it some months like I don’t get a break from it the scaring is horrible and very unattractive which plays with body image and self esteem

Rosie_Scope

That sounds really difficult to deal with @nadey25, sorry you're having to cope with all that. Hope you're doing okay at the moment.