Please help us
 

hello, my wife suffers from a rare and painfull condition called hidradenitis supretiva, we are in an ongoing struggle to get help as recognising this as a disabilty, on a good day she can walk and move about without too much pain a bad day she cries with pain and can't move, all we ask is you sign the petition and maybe we can get the govenment to at least look into doing something, unfortunatly there is no cure and surgury is very invasive, please as i know this is a very sensable minded site if you don't wish to sign it then please don't make nasty comments as other forums have, this only upsets her and makes for a bad day worse.

kindest reagds mark

Petition to: To allow Hidradenitis Suppurativa to be a recognised Disability and more research to be done about it.

Ive signed, but waiting for the confirmation email

Good Luck with the petition

Signed - good luck with your campaign. I can't imagine not being able to play with my little boy.

Signed

Signed up!
Cheers,
astraboy.

As above tho, tried to click the link in the e-mail received - nothing doing

signed i hope something comes available for your wife good luck :)

Stephb xx

Done ........

What's the benefit in getting this recognised as a disability ?

I can understand wanting more research and all that - but why the need for it to be termed a disability ?

Done :)

pm sent reality, if you like google the conditon have a read mate, hopefully you can understand a bit then

cheers mark

Signed. :thumb:

Good Luck

this is marks wife posting,
i have had this condition for over 10 years, i have limited use of my left arm and also lost feeling from my shoulder to my elbow, this is a result of scaring and also the fact when i'm in pain from a huge flippin boil, abcess, call it what you want, i can't move an inch,Ever been to bed with toothache n no painkillers can ease it?? imagine that but on certain parts of your body. i gave birth 4 months ago and never did i imagine not being able to cuddle or feed my little one, mark has to help me undress and get dressed, days i can't wear underwear, i can't even walk on bad days,the only dignity i have left is the fact i still wipe my own backside, mark would even do that if i asked him to, but i'm 34 and i wouldn't expect my husband to do that for me, i would rather bear the pain, so although its a physical disability i have i also fight daily the mental stress it puts on me. would you ben down if you couldn't do daily tasks like make a cuppa?
the reason we are asking for it to be a recognised disability is because Most of us get refused DLA, i'm currently waiting for a tribunal to argue my case, yet i see people who claim for disabilities, even depression and they get it, with HS its not a common ilnness so people including doctors don't understand it. i'm trying to raise awareness to those who need to know what its all about. Mark is fantastic,he goes beyond the call of husbandly duties, most men would walk away, not only does it affect me its affects my family also, i have a 50/50 chance of passing it onto my kids, and i prey they never get it. with upmost respect to you, unless you know about HS i can only tell you why it needs more research and to be recognised as a disability.
Its not about the money, its the fight for our rights, and to make our lives that little bit more comfortable. Mark gave up work to become my full time carer and to look after our kids.I hope this answers your question reality.

A big thankyou to to those who have signed on here, this petion was started by me but its also for fellow HS sufferers on a Support group i use online. so from all of us a big thanks for taking the time to sign.
Enjoy your day everyone
nikki

signed

Signed.

good luck for this, i'll keep my fingers crossed for you.

Why dont you ask Simon (Webby) if he can make this a sticky for a few weeks??

just a thought!:thumb:

Best wishes and good luck.

I am sure you have written to your MP. If not do so and ask him/her who else you should be writing to and/or copying your petition. At the end of the day I expect there will be a small committee in Dept of Health or similar that actually decides what defines a disabilty. Is there a larger charity that you can link to and maybe get some help with your campaign?

dl (signed btw)

Signed..:thumb:

Good luck!!..:)