Midlands mother with Stiff Person Syndrome has been unable to leave her house in 5 YEARS

June 10, 2016

Helen Stephens, 50, has suffered excruciating spasms for the past 17 years
An attack causes her muscles to swell up and feel like they are tearing
Every day she takes enough tranquilisers to knock out 12 men
Has been left bed-bound in her lounge for the past 5 years due to condition

Madlen Davies for MailOnline

Published:
06:58 EST, 10 June 2016

|
Updated:
14:40 EST, 10 June 2016

View
comments

A mother-of-three whose rare illness leaves her muscles swelling up ‘like the Incredible Hulk’ claims she is a prisoner in her own home due to the condition.

Helen Stephens, 53, of Wednesbury, in the Black Country, has been left crippled by Stiff Person Syndrome (SPS) – a rare and currently incurable neurological disorder affecting one person in every million.

She regularly suffers attacks which means her muscles tear and expand, making her swell by four inches – a feeling she likens to having ‘red hot pokers’ under her skin.

Her muscles are also crushing her lungs and heart every time she has a spasm – leaving her gasping for breath – and she believes the condition may kill her.

She has been stuck in her lounge since 2011 when a specially adapted back bedroom was flooded – and claims her local council are about to cut her funding even further.

Helen Stephens, 53, suffers a rare illness that causes her muscles to swell up ‘like the Incredible Hulk’

Mrs Stephens claims she has not been able to leave her lounge for five years due to the condition, and desperately needs a new bed as her carers cannot hoist her out of the current one to take her to hospital

Mrs Stephens began suffering the painful symptoms shortly after a car accident in 1999.

She was eventually told she had SPS and was put on diazepam – strong tablets which relax muscles – to control the stiffness, pain and swelling – which are usually prescribed to help people sleep.

Now, she takes enough tranquilisers to knock out 12 men each day.

Woman, 27, dies in agony from disease which made her skin…

The cancer survival lottery: Patients with lung and ovarian…

From 5 stone to bodybuilding champion: Anorexic who weighed…

Is constipation a sign you have an STD? Gut problem ‘may be…

She also experiences a heightened sensitivity to stimuli – and noise, touch and emotional distress can trigger attacks.

Describing such a spasm, Ms Stephens said: ‘When I have a bad attack I swell up like the Hulk.

‘I look enormous and I even call myself the Hulk, Arnie (Arnold Schwarzenegger) or Rambo. I’m like a bodybuilder.’

Mrs Stephens has been left crippled by Stiff Person Syndrome (SPS) – a rare and currently incurable neurological disorder affecting one person in every million

After being diagnosed, Mrs Stephens was put on diazepam – medication to relax her muscles. Pictured before falling ill ad with her daughter Hannah, she now takes enough tranquilisers to knock out 12 men

The council are not cutting her care package. ‘I think the help out there for vulnerable adults in their 50s is horrendous. I know of others struggling too and we are not treated right,’ Mrs Stephens said

Desperate for more help, Mrs Stephens says she needs a hospital bed, claiming she cannot be hoisted out of the one she is currently lying in,

She said she has received limited help from Sandwell Council and she has been told her care package will be reduced at the end of the month.

She began suffering the painful symptoms shortly after a car accident in 1999

‘I am in desperate need of a proper hospital bed,’ Mrs Stephens said. ‘What I have isn’t the correct one and is leading to SPS attacks.

‘I have repeatedly asked Sandwell Council for one but my pleas have fallen on deaf ears.

‘This bed isn’t safe for me or those carers who come to my house to help me.

‘I cannot be lifted off the bed safely and when paramedics come to take me to hospital they also struggle.

‘There is a hoist in the other room but I am stuck in the lounge so this cannot be used.

‘I am appealing for help. If there is anyone who can supply a hospital bed for me I would be very grateful.’

Mrs Stephens claims other facilities in the house are yet to be updated – and she was told her care package will change from July.

‘I have also been told they will reduce the hours carers spend here and if I don’t like it I can go into a home,’ she said.

‘I think the help out there for vulnerable adults in their 50s is horrendous. I know of others struggling too and we are not treated right.’

Anne Shackleton, cabinet member for adult social care at Sandwell council, said: ‘The council is aware of the concerns Mrs Stephens has.

‘We are working closely with public health to support Mrs Stephens in the best way we can in relation to her package of care.’

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.

Stiff Person Syndrome leaves Mrs Stephens too disabled to walk – and she hasn’t left her lounge for years

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.