Rare diseases placed in support spotlight; Centre wants to raise awareness.
MANY of us are aware of the devastating effect that serious illnesses like cancer and heart disease can have on lives.
But what about the people in the UK living with conditions we have never even heard of ? And how do people living with rare illnesses such as Erdheim-Chester disease cope when treatment, research and services are limited? The Nerve Centre in Huddersfield is shining the spotlight on people who are in exactly this situation.
The centre, in Half Moon Street, supports those living with neurological conditions and aims to raise awareness of their plight.
Rikki Heppenstall, administrator at the centre, said: "With illnesses like cancer and heart disease there's some awareness of how people are affected and what treatment is available.
"But these more commonly known illnesses can overshadow the fact that there are millions of people out there living with other rare conditions.
"Many of these people don't have the help they need, they have no support group near to them or are over 100 miles away from the right specialist.
"We want to raise awareness that there are other conditions out there that are just as debilitating and to help people living with these conditions by offering them the support they need."
The Nerve Centre provides people in Kirklees living with neurological conditions with information, therapies and activities.
These include Simon Dedrick, who suffers from an extremely rare disorder called Erdheim-Chester disease, of which there has been only 300 cases reported in the world.
It took 12 months of MRI scans and biopsies to diagnose Simon with the disease, caused by the excessive production of white blood cells.
Simon found the support he needed at the centre and now works as a volunteer to help other members.
Member Carol Garforth waited three years for her diagnosis of spasmodic dysphonia, a form of dystonia, which causes spasms of the larynx making speech very difficult and painful.
She said: "Because it isn't a life-threatening condition, very little is spent on research. There isn't enough awareness about the condition which is very important.
"I cut myself off from anyone who doesn't understand. Repeating myself can be painful and frustrating and often I can't be heard."
Carol is now working to set up a group in the area for people living with the illness to help them connect with others dealing with similar issues.
Rikki added: "People with these conditions may feel isolated and that others don't understand their condition. "We give them the chance to take more control over their lives by getting the help they need as well as meeting people with other conditions."
For more information on becoming a member of The Nerve Centre call 01484 469853 or email firstname.lastname@example.org
* OFFERING SUPPORT: Administrator Rikki Heppenstall