The story of Jason Jones, Hidradenitis Suppurativa patient

jjones-paper

Posted: 9:35 am April 27, 2014
ulsterherald.com

A FINTONA man is making an impassioned appeal to politicians and legislators to help transform his life as he is practically housebound due to a rare agonising medical condition.

For the last 27 years Jason Jones’s life has been blighted with a chronic skin condition known as Hidradenitis Suppurativa (HS) which manifests in excruciating abscesses on the most tender parts of the body. It is a condition affects less than one per-cent of the population and is caused by abnormalities in the apocrine sweat glands. These glands are found around the buttocks and genitals, the armpits and behind the ears.

As a result 44-year-old Jason is in “extreme agony” when he sits or if his back is in contact with a surface.

Unless Jason can have access and permission to use a Segway mobility vehicle he believes his hellish existence is set to continue.

A Segway is two-wheeled, self-balancing, battery-powered electric vehicle that can be easily driven. It does not require the user to sit while the back is also free from any friction.

However Segways are legally prohibited from being driven on public footpaths and cost £4,600 to purchase. Jason has appealed for a change in the law and funding to be made available for people in his position. He spends most of his day lying down as he it gets tiring standing for extended lengths of time.

The former bar man and band roadie told the Ulster Herald, “I’ve had 96 operations since I was 17. There is no cure for my condition. No word can describe the pain and my life is totally restricted. I can’t go to the cinema, concerts, sports games… anywhere. After so many operations on my rear end there is just scar tissue with no fat left and the pelvic bone is rubbing inside. I have to stand to eat and I’m mostly confined to bed.”

‘SOMETHING MUST CHANGE’

Jason goes no further than the shop across the road and is desperate to use a Segway.

He added, “It is a progressive condition and obviously I can’t work now. I have tried everything including faith healers. Segways are very simple to use. If you lean forward it goes forward and it can reverse and do a 360 degree turn.

“I contacted ‘Mobility’ and they say I am the first person to ask for a standing machine for movement but I was refused. They say it does not meet the criteria of disability transport and can only be used on private property.”

Jason is imploring politicians and the health service to support his plea to change the law.

“I have been trying to highlight my situation and just hope some-one will listen. A segway is really a wheelchair that makes you stand up. It would give me a life and independence.

“It can be very lonely existing like this at home and not socialising. I am strong minded and I say to myself, ‘something must change.’ If I could get a Segway and permission to use it my life could be totally transformed.”

SOUCE: http://ulsterherald.com/2014/04/27/rare-skin-condition-keeping-fintona-man-housebound/

Images below provided by Jason Jones

jason-jones

jjones2

jjones3

jjones4

0 Comments

Leave a reply

HSAWARENESS.ORG | Fighting for Hidradenitis suppurativa (HS), a.k.a Acne Inversa Patient and Doctor Awareness ©2017 hidradenitissuppurativaawareness.org  All Rights Reserved. Your use of this website constitutes explicit agreement to our Terms of Use and Privacy Policies. This website does not provide medical advice, diagnosis or treatment.

Log in with your credentials

Forgot your details?