Ayesha in heartfelt plea

Jun 9 2008 by Paul Loraine, The Journal

A TEENAGE girl with a rare immune system disorder which has left her unable to leave the house without a wheelchair has spoken of her hope that North scientists may find a way to cure her.

Ayesha Ahmed, 15, suffers from Wegener’s disease – an inflammation of the blood vessels where the immune system attacks its own body’s tissues.

It has affected Ayesha’s lungs, making it hard for her to breathe, and she is hooked up to an oxygen machine 24-hours-a-day.

Relentlessly positive in the face of her condition, she has spoken out in support of The Puffin Appeal – an effort to raise £2m for a new children’s respiratory department in Newcastle, backed by The Journal.

Part of the new department, set to be located on the site of the Royal Victoria Infirmary, will be a centre for academic research, and Ayesha is hopeful that better ways of managing, or even cures for, her condition and others may be around the corner. “With the money more research should be done into other treatment options,” she said.

“Just because conditions are rare, it doesn’t mean that they should just be left alone.

“There’s a lot of research being done into stuff like asthma because it’s so common.

“I like to stay positive and hope that they will come up with the magic thing to cure me.”

Ayesha, who lives with her mum Nahida and three younger sisters in Lindale Road, Fenham, Newcastle, was initially wrongly diagnosed with asthma by doctors outside the North East in 2005.

But the family moved to Newcastle around two years ago and her condition was found to be more serious. Ayesha said: “There should be more awareness of this condition.

“After being told for so long that it was asthma and then somebody coming along and telling me it was something else – I felt very shocked.

“You can’t get up and run upstairs or quickly run to the shops or even play outside.

“I used to do a lot of stuff like rock climbing, playing cricket and riding my bike but can’t now.”

Ayesha has been having chemotherapy for about six months but the initial signs as to its effect are not good.

“We are just waiting to see whether I show any improvement,” she said.

“They are not sure whether the damage on my lungs is permanent or reversible.

“The last resort is a lung transplant but I just hope it doesn’t come to that.”

Nahida, Ayesha’s mum, said some experts – again outside the region – had gone as far as to suggest Ayesha was exaggerating her illness and she was even referred to a clinical psychologist.

“It was an incredibly frustrating time. She’s not the sort of child who wants to be inside. She has to now because she can’t get next door without being exhausted. Why would she make it up?

“Employing experts to do research into the condition can only help and make sure we avoid situations like the one we found ourselves in.”