x Abu Dhabi, UAESaturday 29 July 2017

Agony of Abu Dhabi girl who is wasting away

A 23-year-old struggles to even get around her small Khalidiyah flat due to a debilitating chronic muscle condition.

Noura suffers from muscular dystrophy and has spends most of her time in her apartment in Abu Dhabi.
Noura suffers from muscular dystrophy and has spends most of her time in her apartment in Abu Dhabi.

ABU DHABI // Noura's room looks like that of any young woman, with a dressing table with make-up, a giant poster of one of her favourite films, a computer.

But this is where the comparisons end. For the 23 year old, who was born and brought up in Abu Dhabi, this room is where she has to spend virtually all of her time.

Born with facioscapulohumeral muscular dystrophy (FSHD), a degenerative muscle disease, the young Egyptian is housebound, unable to move freely.

One of nine primary types of muscular dystrophy, FSHD gradually weakens the skeletal muscle, with symptoms usually appearing during the teenage years. There is no cure but patients usually live a normal lifespan.

Being raised by just her mum for the past 11 years, Noura, an only child, is unable to claim enough physiotherapy classes on her mother's health insurance to stop her mobility decreasing at a quicker rate.

She can only take 10 classes a year and is already almost halfway through her paid-for sessions, which have been covered since June.

Having been covered fully by her father's insurer when the family lived together, Noura was able to receive necessary operations, a wheelchair specifically suited for her needs and private tuition.

"About 14 years ago I used to be up and going everywhere. I slowed down a lot during the years," Noura said. "The lack of physiotherapy … I can't afford it now.

"It's really difficult to even motivate myself to want to do stuff because I'm emotionally and physically drained."

Even with her mother working two jobs to keep them afloat, the pair struggle to make ends meet, and their the most recent rent payment is four months overdue.

Noura's mother is in the process of taking her former husband to court in a bid to force him to help pay for Noura's ongoing care. After the family separated, her father took her electric wheelchair.

Last summer, with help from a friend's father and loans, Noura and her mother went to London for surgery to help correct her right hip.

"I had people help me and, of course, I took some loans and I borrowed money from people," said Noura's mother. "This is an actual surgery I needed," Noura said.

"I found it hard to breathe at some points because the curvature of my spine was pressing against my lungs and I couldn't take a good, deep breath. I couldn't inhale or exhale properly, so I'm very lucky that a friend of ours decided to help."

Although the surgery helped, further operations to improve Noura's alignment cannot be carried out because of the risk of damage to her heart and lungs.

Walking from the couch to the door of her room has become an arduous task.

With full insurance coverage, a variety of options, such as access to a swimming pool, would be available to Noura. Therapy would reduce the speed at which her muscles waste away. "I would be swimming more. I would have a daily physiotherapist just helping me keep my muscles - or what's left of them - moving and not deteriorate at the rate happening just now."

With her body tipped off-balance, Noura must walk leaning towards the right to keep her body as straight as she can.

Outside her apartment in Khalidiyah, the provisions for someone in a wheelchair are few and far between.

"I can't even leave my own building independently, or with my mum," Noura said. "We always have to ask for someone to get a hold of the front of my wheelchair and lift it down a couple of steps to get to the door."

Once outside, she faces the problem of flagging a taxi that can accommodate her wheelchair - a relatively cheap brand bought by her mother.

"Ideally, my wheelchair would probably be one that has head support, and one that could be easily folded," Noura said.

After she left school in 2006, limited finances forced Noura, who is interested in psychotherapy and graphic design, to put aside the idea of attending university.

Over the past six years, many of her school friends have moved abroad for university or work, so she does little socialising.

Noura and her mother hope that their case, if taken to court, will give them some respite from their current situation.

"The depression kicks in and you're like, I'm going to just let it be and give in to the things that are weighing me down," Noura said. "It's really hard to make a life here."

zalhassani@thenational.ae

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