- Lindsay Clarke was diagnosed with Stiff Person Syndrome in 2011
- 33-year-old is confined to her bed, held prisoner by the rare disease
- Condition affects one person in every million causing muscles to stiffen
- Former dancer suffers violent and unpredictable muscle spasms
07:08 EST, 6 May 2014
|
08:12 EST, 6 May 2014
Lindsay Clarke suffers the rare disease Stiff Person Syndrome, leaving her in agonising pain as her body stiffens into a living statue
Violent spams and excruciating pain consume her, leaving her gasping for breath as her body stiffens into a living statue.
Mother-of-three Lindsay Clarke is confined to her bed, held prisoner by an extremely rare disease, which threatens to kill her.
The 33-year-old can no longer breathe without the help of an oxygen mask, as her muscles contract and her body stiffens.
The former dancer has Stiff Person Syndrome – a rare and currently incurable neurological disorder affecting one person in every million.
Mrs Clarke said: ‘I was active, healthy and ambitious
and almost overnight I became so overcome with exhaustion I could
barely lift my head off the pillow.
‘My
spasms have travelled from just my legs to right the way through my
body – they affect my face, brain, and respiratory system.’
She
was training to be a lawyer when she was struck down by the illness in
2011, leaving her too ill to work or look after her children,
Olivia-Beth, 12, Mollie-Jai, seven, and Dylan, four.
Her
symptoms baffled doctors for almost a year, first diagnosing her with
post-natal depression, fibromyalgia, chronic fatigue syndrome and lupus.
The condition has forced Mrs Clarke to lock herself away to avoid sound, light and touch – all of which can trigger an attack.
She said since diagnosis her condition has deteriorated, adding: ‘Battling the disease is like fighting a ghost.’
Spasms can be violent and unpredictable. When they strike they can be so severe, they cause Mrs Clarke to break bones, leaving her in horrific pain.
The condition leaves the 33-year-old confined to her bed and unable to breathe without an oxygen mask
The neurological disease causes her muscles, especially those in the torso and limbs, to stiffen over time
The condition has forced Mrs Clarke to lock herself away to avoid sound, light and touch – all of which can trigger muscle spasms
A RARE DISEASE AFFECTING ONE PERSON IN EVERY MILLION
What is Stiff Person Syndrome (SPS)?
Stiff-person syndrome is a rare neurological disorder with features of an autoimmune disease.
It causes a patient’s muscles to stiffen over time – typically affecting the torso and limbs.
The condition is often triggered subtly by a period of emotional stress and it commonly develops in a person’s mid-40s.
Sufferers can also experience a heightened sensitivity to stimuli, including noise, touch and emotional distress, which can trigger muscle spasms.
People with Stiff-Person Syndrome can be too disabled to walk.
Abnormal postures – often hunched over or stiffened – are characteristic of the disorder.
What causes the rare disorder?
Stiff Person Syndrome affects twice as many women as men.
It is often associated with other autoimmune diseases including diabetes, thyroditis and the skin condition vitiligo.
Scientists do not know what causes the condition, but research has shown it is the result of an autoimmune response that has gone awry in the brain and spinal cord.
How is it diagnosed?
The condition is often mistaken for Parkinson’s disease or multiple sclerosis.
A definitive diagnosis can be made with a blood test.
People with Stiff-Person Syndrome have raised levels of an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.
There is no cure for the disease at present but it can be managed with medication.
Her muscles tear and internal organs harden making it impossible to breathe unaided.
The mother-of-three said: ‘Each day I watch my tots leave from the view of my bedroom window.
‘They
are each growing, changing, developing their own personalities and I am
not a part of it. I am only able to see from afar.’
Her
only hope for treatment is to pay for a Stem Cell Transplant but the
procedure has never been offered in the UK for anyone suffering from
Stiff-Person Syndrome.
‘My only option is to leave the country and privately fund my treatment,’ Mrs Clarke said.
‘I am looking into Canada, Australia, possibly Colorado, but even in these countries it is still classed as clinical trials.
‘But I am willing to do whatever it takes, I need to get my voice heard, I am suffering in silence and slowly dying.’
Her husband Jason, who she met when she was 12, has never left her side throughout her diagnosis and treatment.
She said: ‘We grew up together, he was my trusting friend. We had so many hopes, dreams and aspirations we wished to fulfill.
‘But our dreams have all gone because of Stiff Person Syndrome.
‘I feel like I have been robbed and Jason has no choice but to raise our three children alone.’
Mr Clarke has given up work as a driving instructor to become his wife’s full-time carer at their home in Pontypool, South Wales.
He regularly monitors her oxygen levels and has to pump her chest to help her breathe.
‘When I am choking during spasm, vomiting and coughing up blood because my lungs are contracting so hard I can see the look of fear on Jason’s face,’ Mrs Clarke added.
‘Jason has tried contacting the hospital, but no one will help. He just keeps getting told that this is a complex case.’
Mr Clarke said: ‘I can’t sit back and watch her die – she was so headstrong and active. Now she is a shell of her former self.’
Mrs Clarke, pictured left on her wedding day with husband Jason, was diagnosed with the condition in 2011. Since then Mr Clarke has given up work to become her full-time carer
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Comments (17)
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The comments below have been moderated in advance.
Anni,
County Durham, United Kingdom,
2 hours ago
I truly hope she can raise the money for help abroad.. Over here they are only interested in Cancer and Aids..
Many is the time I hear of a fund raising day for a little known illness then lo and behold there is an aids awareness day to be held on the same day.
Good Luck Mr Mrs Clarke I hope they manage to alleviate the condition, at least make it possible for her to see her children grow up
Angel,
I care., Australia,
2 hours ago
Her husband is a wonderful man to stay by her side no matter what.
cfcprotocol,
london,
3 hours ago
keep fighting!
Ron,
Stevenage Herts,
3 hours ago
It would be nice if the person who won last week’s Euro lottery could fund this. It is exactly the sort of thing I would do given the amount. Not responding to begging letters but genuine heartbreaking cases like this.
Ron,
Stevenage Herts,
3 hours ago
I guess that if she tried to claim disability benefit should be classed as able to work. They would cite the fact that she can blink and therefore operate an adapted computer.
aravalon,
New York, United States,
3 hours ago
Poor thing. Hope she gets better.
Ann,
West Midlands, United Kingdom,
3 hours ago
Poor soul, I have polymyalgia Rhumatica and the muscle pain from that is bad enough, I just can’t imagine what she is going through.
Deena,
London,
3 hours ago
I think it was Channel 4 (or BBCThree) which did a show on a girl who had the same condition(?) She lived in the UK, I hope they can meet up somehow, it might be easier for them to understand each-other?
miley2,
Chester, United Kingdom,
3 hours ago
Absolutely awful – it must be terrifying living with this 24 hours a day every day. Surely there is something someone can do to help? Come on all you rich footballers and “celebritiesâ€
PeaceToAllGoodPeople,
Hove,
3 hours ago
I hope that gene replacement therapy can help her soon…
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