Young model has incurable 'rag doll' syndrome which makes her go weak and floppy at any moment

As a model, Clare-Alana Ford has to hold hard, angular poses for long periods.

But she can go weak and floppy at any moment due to a rare muscle condition – just like a real-life rag doll.

Ms Ford, 22, from Hayling Island, Hampshire, suffers from a bizarre condition that makes her body go limp and weak without warning.

The incurable condition, often nicknamed the rag doll disease, can cause Ms Ford to lose all control of her voluntary muscles, such as those in her legs and arms.

Clare-Alana Ford, 22 has forged a successful career as a model (left), despite suffering from a rare muscle condition which makes her go weak and floppy at any moment. She had surgery to remove her thymus gland in 2013 (pictured right) and is waiting to see if it has been successful

 

Ms Ford says sometimes she will attempt to do her hair and make up, but her arms will go limp and floppy

Despite her 'rag doll' condition - known as myasthenia gravis – she has worked hard to forge a successful modelling career

But despite her rag doll condition - known as myasthenia gravis – Ms Ford has managed to forge a successful modelling career.

Clare-Alana said: 'Sometimes I will go to put my hair up and suddenly my arms will just go limp and flop down to my side.

'I've been walking along the road before and my legs will just give way, and there's nothing I can do.

'It's a condition that improves with rest so I have to talk breaks when I'm doing activity.

'It sounds strange but it's just like a rag doll.

'It can be difficult as I get very tired, but I refuse to be a slave to my condition.

'I love modelling and I've been able to be successful despite my health issues.

WHAT IS MYASTHENIA GRAVIS? 

Myasthenia gravis is a rare long-term condition that causes certain muscles to become weak.

It mainly affects muscles that are controlled voluntarily –often those controlling eye and eyelid movement, facial expression, chewing, swallowing and talking.

Sometimes, the muscles that control breathing, neck and limb movements are also affected.

The muscle weakness associated with myasthenia gravis is usually worse during physical activity and improves with rest.

It is an autoimmune condition that affects the nerves and muscles. 

Autoimmune conditions are caused by the body's immune system mistakenly attacking healthy tissue.

In myasthenia gravis, the immune system produces antibodies (proteins) that block or damage muscle receptor cells.

This prevents messages being passed from the nerve endings to the muscles, which results in the muscles not contracting (tightening) and becoming weak.

It is not fully understood why some people's immune systems produce antibodies that attack the muscle receptor cells.

Source: NHS Choices

'But at around the same time I started to get very tired easily and weak for no reason at all - I was terrified I'd fall over on the runaway in front of everyone.

'I was very active and I did ballet, so I thought I was just doing too much.

'I was nervous but I loved the experience of modelling, and I decided to embark on it professionally.

'Then I remember once my legs just totally gave way and I felt like a weight was pushing down on me and I couldn't get up.'

At first the doctor told her she was suffering from growing pains, but she pushed for further tests.

Eventually she was diagnosed with myasthenia gravis, an uncommon condition which affects about 15 in every 100,000 people s in the UK.

Ms Ford said: 'At first the doctor told me it was growing pains, but I knew it was something more so I pushed for further tests.

'Eventually I was diagnosed with myasthenia gravis - I'd never even heard of it before.

'It was very scary and such a shock to be diagnosed with something so foreign to myself, and something that even medical professionals knew little about, but I was determined to carry on with my life as normal.'

Ms Ford has continued to model, and even had surgery last year in the hope of treating her condition.

She said: 'I had surgery in July 2013 to remove my thymus gland, as there is some evidence that this can help kick start the condition into remission and aid symptoms.

'It can take up to three years to see improvement so I have a little while yet.

'For now I'm taking medication and I'm trying not to let it affect me too much.

'It can be hard as the condition is invisible, so often people don't realise if I'm having a particularly bad with it.

'People can be quite insensitive at times because of their ignorance about the condition and I'm often mistaken for being lazy which is very upsetting.

'Stress can play a big factor in worsening the symptoms so I try to stay cool and not let things affect me too much.

+8

Ms Ford is able to model but has to take breaks, as her condition improves with rest

Ms Ford now hopes to move to L.A. to meet people in the modelling and entertainment industry

As her agency is based in London, she says travelling back and forth on the tube can be 'daunting' with all the stairs and crowds

What is myasthenia gravis and can it be treated?

'Sometimes I've had to pass up jobs as I've been ill - I had the opportunity to model for Harrods but I was too unwell to accept it, and I turned down the chance to model in Thailand as I was having surgery.

'My agency is based in London so traveling back and forth can sometimes be daunting and scary - the idea of facing the tube on a casting day is mortifying for me with all the stairs and the crowds.

'It's hard sometimes to miss out on things, but it just makes me more determined to get better.'

Now, she has become a successful model, and hopes to move to Los Angeles to further her career.

Ms Ford said: 'Shortly after I was diagnosed with the condition I flew out to America to have a break from it all.

'I loved the lifestyle out there and I ended up meeting lots of successful and celebrated people involved in the modelling and entertainment industry.

'It made me realise that I could still have fun and be me, regardless of the condition.

'I won't let anything hold me back' Ms Ford says

'Now, I'm in the process of applying for my US via and continuing my modelling career.

'I won't let anything hold me back.'

Ruth Ingledew, CEO of Myasthenia charity, Myaware, said: 'Myasthenia Gravis is a neuromuscular condition which affects the transmission of messages from nerves to muscles.

'The brain can tell a muscle that it wants to, for example, lift up an arm, but the more the message tries to get through, the message gets weaker and weaker, until eventually the arm can't lift up anymore.

'Initially it can affect the facial muscles so often people are misdiagnosed with a stroke.

'We don't know what triggers myasthenia gravis, but women tend to be diagnosed in their 20s and 30s, whilst men are diagnosed in their 40s and 50s - our figures suggest that there around 10 to 12,000 people with the condition in the UK.

'In the past, myasthenia gravis could be fatal, but these days there are medications that work very well, and people can go on to lead happy, normal lives.

'If people want any support or information about the condition, we have a great website and a Facebook page that sufferers of all ages will find useful.'

For more information visit www.myaware.org.

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