Woman Who Suffers Seizures And Paralysis Claims UK Weather And Mould Are To Blame | HuffPost Life

'It was a living hell.'

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A singer was forced to give up her home and escape to Spain to avoid excruciating pain, violent seizures and paralysis she claims are caused by the weather.

Katie Steward suffers from rare sensitivities to airborne chemicals and mould which means when the wind blows she feels ‘poisoned’ and like her brain and spine will explode.

But the 39-year-old – who is so sensitive to light, sound and touch she must spend hours alone in a darkened room – claims doctors do not believe her condition is real and have instead diagnosed her with chronic fatigue syndrome, also known as ME, and agoraphobia.

After gaining temporary respite by fleeing her home in Chelmsford, Essex, for Spain in 2014, Steward is now fundraising to move to a remote chemical-free mountain location in New Mexico, USA.

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Steward, who previously trained to be an opera singer, said: “For years I had believed what doctors had told me – that while ME may feel awful, it wasn’t a dangerous illness.

“Then suddenly, without any warning, I was dying.

“Everything gave way at once – my gut broke down, I began seizing, I became incontinent, I couldn’t raise my head from the pillow or tolerate light, noise, movement or any stimulation at all.

“I got to the stage I was in such excruciating agony I couldn’t tolerate any touch or anyone coming into my room.

“I was so desperate for human contact and comfort but the illness forced me into isolation. It was a living hell.”

Steward was diagnosed with ME 24 years ago as a teenager after suffering a ‘never-ending’ bout of flu and became bed-bound, meaning she was unable to complete her equine science degree.

In 2012, tests at a specialist environmental illness hospital confirmed she was highly sensitive to many chemicals, moulds and foods but antiviral treatment was deemed expensive and potentially risky.

But in 2013 she became dramatically worse, losing the ability to eat solid foods because her digestive system felt ‘paralysed’, and was only able to eat tiny amounts of protein milkshake and baby food.

She lost five stone in five months and was too weak to lift her head off the pillow, became incontinent and needed 24-hour care.

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But Steward claims GPs refused to help her – instead diagnosing her with agoraphobia and allegedly claiming her parents “must have been ashamed of what she had become”.

In 2014, a desperate online search revealed a group of people describing similar paralysing symptoms – that windy conditions made them feel as though they were being hit by “nerve gas”.

Sufferers – who likened the condition to Multiple Chemical Sensitivity – blamed mouldy and chemical-laden environments and those who moved to dry, remote climates reported mind-blowing results.

Steward begged to test the theory and two weeks later travelled to the north Norfolk coast by private ambulance – and the next day claims she was able to walk from her bed and eat egg mayonnaise.

She was then transported by motorhome to a villa in Tabernas, a town in the Almeria desert in Spain, but her condition worsened on arrival and she discovered the area was popular for olive farming.

Steward was again moved to the Costa del Sol and, having lived there for the last year, is able to eat a little, wash and dress herself but still needs 24-hour care.

The airborne chemicals from crop-spraying over the summer has caused her health to decline again and she fears if she is forced to return to the UK she will die from toxic overload.

Steward’s friends and family have launched a fundraising target of £10,000 to pay for a motorhome in the USA but also need short term cash to find a new European home for her for the winter.

Steward said: “When my friends and family thought I had only weeks to live, I found a PDF by a man called Erik Johnson who talked about toxic mould and described what was happening to me to a tee.

“Everything about my illness over the years fell into place and suddenly, where I had been coming to terms with my own approaching death just moments before, I had a real choice.

“I can’t move to the USA permanently because of visa issues but Europe doesn’t have the vast wide open desert space the USA has.

“I don’t know how many more toxic exposures my body can handle – I feel like I am playing Russian roulette with my second chance.

“My body has shown it can and will respond to a clean location, despite the fact I nearly lost my life, and I have experienced a handful of miracle moments in Spain – always on the beach and always in direct onshore wind.

“As far as I am aware, I am the most severely affected ME sufferer to have attempted this approach.

“I have learned to be vulnerable and to ask for help, and have been moved to tears by the kindness of strangers.

“I long to arrive somewhere where I can breathe freely and find release from pain and to have a safe shelter to sleep in.

“More than anything, I want to make this work and I want to live.”

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Steward’s friend of 15 years Becca Hans, 33, visits her regularly in Spain and is supporting her fundraising mission as well as helping care for her.

The self-employed project manager, from Halifax, Yorks, said: “When I met Katie she was one of the most energetic people that I knew, she had so many things she wanted to do and achieve in the future.

“Katie has lost everything – her home, her pets, many of her friends and all of her possessions.

“Her current location is surrounded by agriculture and on days when the wind blows across the farming, Katie cannot get out of bed – she lays there in agony, suffering seizures and incontinence and trying to breathe through a mask.

“This illness has a stigma attached and its sufferers are dismissed and made to feel guilty in the same way AIDs patients once were.

“Once active, passionate people, sufferers are regularly ignored, accused of being crazy and of not wanting to be well.

“When you turn to the medical community for help and they do not want to know, it is terrifying. She is being abandoned in a dark room to die.

“Katie has given up everything to chase her dream of being able to look after herself once again – the theory has been proven across the world by others and she needs the support to emulate their success – we are relying on the kindness of strangers.”

Dr Apelles Econs, medical advisor for environmental illness charity MCS Aware, said: “Many of the people with chemical sensitivities I see in my clinics often despair for their history and observations to be believed by the medical profession without ‘psychological’ labels.

“They hope to find an antidote for their symptoms, which profoundly affect their work and their family and social life.”

In relation to Katie’s allegations about her treatment by GPs, a spokesperson for NHS England (East) said: “We are unable to comment on individual cases.

“If any patient wishes to raise any concerns about their treatment by a GP, they should contact us via the NHS England Customer Contact Centre by calling 0300 311 22 33 or emailing england.contactus@nhs.net.”

To make a donation: go to www.gofundme.com/katiesjourney

21 Rare Diseases

Stiff Person Syndrome(01 of20)

People who suffer from this acquired neurological disorder experience repeated, often painful, muscle spasms as well as muscular rigidity and stiffness. According to the National Organization of Rare Diseases, spasms can occur at random or they can be caused by something as seemingly benign as light physical contact or an unexpected noise. The cause of Stiff Person Syndrome isn't yet known, but symptoms can be stabilized with medication. Left untreated, however, a person can lose the ability to walk.

Gigantism(02 of20)

This disease, which according to the NIH is most often caused by a begnin tumor in the pituitary gland, results in an excess of GH, or growth hormone. This causes sufferers to grow abnormally large, not just in terms of height, weight but also organ size. It results in complications like delayed puberty, increased sweating, and secretion of breast milk.

Pica(03 of20)

Characterized as an eating disorder, Pica causes people to eat what the National Organization for Rare Disorders describes as "non-nutritive" things. That umbrella term can include (but isn't limited to) dirt, clay, paper, and paint. Interestingly, it's not unusual for young kids to experience transient pica as a kind of phase, and pregnant women are also known to develop temporary pica cravings. The cause? Unknown. But in order to be diagnosed with full-blown Pica, a person's symptoms must last for more than a month.

Maple Syrup Urine Disease(04 of20)

MSUD, which is passed down through families, is a life-threatening metabolic disorder passed down through families that stems from the body's inability to process certain amino acids, leading to a build-up of them in the body. According to the NIH, symptoms usually surface in early infancy and can include vomiting, lack of energy, seizures, and developmental delays. MSUD takes its name from another symptom -- the urine in affected infants smells like caramel or maple syrup.

Situs Inversus(05 of20)

Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. People with Situs Inversus typically wear some form of identification to help doctors in the case of a medical emergency.

Trigger Thumb(06 of20)

Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. According to the Mayo Clinic, it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.

Scurvy(07 of20)

Once the disease of sailors and pirates, scurvy does still exist in the United States, though predominantly in older, malnourished adults. It usually stems from a Vitamin C deficiency, which can result in gum disease, skin leisons, and swelling of the joints. (credit:Getty )

Wilson's Disease(08 of20)

This progressive genetic disorder causes sufferers to store excess copper in tissues, including the brain and liver. Though the Mayo Clinic says that the body depends on copper in order to use iron and sugar, too much of it in the body can have real consequences. Which is why sufferers of Wilson's Disease are prone to liver failure.

Foreign Accent Syndrome(09 of20)

According to researchers at the University of Texas at Dallas, this speech disorder causes people to experience a sudden shift in their accents and though it is known to be caused by things like brain trauma, conversion disorder, or multiple sclerosis, an exact reason behind the syndrome is unknown. Sufferers of FAS dramatically shift their speech in terms of timing and intonation, which often causes them to sound foreign, but they remain totally comprehensible. Documented accent shifts include from American English to British and from British to French.

Carcinoid Syndrome(10 of20)

According to the National Organization of Rare Diseases, about 10 percent of people with carcinoid tumors -- which the Mayo Clinic says are slow growing tumors that produce excess serotonin and usually appear in the gastrointestinal tract or lungs -- get this syndrome. It occurs only in patients whose tumors have metastasized to the liver. The symptoms? Wheezing, hotness, and extreme facial blushing.

Cyclic Vomiting Syndrome(11 of20)

Children and adults afflicted with CVS experience recurrent episodes of severe vomiting, which can last for days, followed by sudden periods of no vomiting. While kids are likely to experience more frequent attacks, adults's often last longer. To date, the cause of CVS is unknown.

Peeling Skin Syndrome(12 of20)

This obscure, genetic skin disorder does exactly what its name implies: causes sufferers to experience constant shedding of their skin. (In some patients, peeling is limited to the feet and hands.) Along with that, sufferers often feel itching and redness -- symptoms that can appear from birth or develop later in life. Although the exact cause is unknown, a mutation in the TGM5 gene has been identified in many sufferers.

Platelet Storage Pool Deficiency(13 of20)

This is a blanket designation for several rare platelet abnormalities, most of which lead to mild or moderate bleeding disorders. According to the NIH, the problem stems having limited granules -- the parts of platelets that, among other things, store ADP -- the energy released when a molecular bond is broken. That reduction in storage space inhibits the platelets' ability to secrete ADP in a speedy fashion, which is thought to be what causes the bleeding. Classic symptoms of a Platelet Storage Pool Deficiency are nosebleeds, excessive bruising, and profuse bleeding in surgery.·

ACDC(14 of20)

Only nine people in the United States are known to have this disease, which was just given a name in a recent study in the New England Journal of Medicine. ACDC, or arterial calcification due to CD73 deficiency, results in calcium build-ups in the arteries below the waist of sufferers and in the joints of their hands and feet. According to the NIH, the breakthrough discovery found that the disease is related to a variant in the NT5E gene.3

Conversion Disorder(15 of20)

This condition, which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·

Ochronosis(16 of20)

Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though scientists aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.

VLCAD Deficiency(17 of20)

This condition, which is caused by genetic mutations in the so-called ACADVL gene, keeps people from converting certain fats to energy. According to the NIH, the deficiency often presents during infancy in symptoms including low blood sugar, weakness, and lethargy.

Hairy Tongue(18 of20)

As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. According to the Mayo Clinic, the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. The NIH reports that hairy Tongue can also present as brown, yellow, or green discoloration. ·

Ochoa (Urofacial) Syndrome, or, Peculiar Facial Expression(19 of20)

This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. The disorder also includes an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. Though treatment does exist in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.

Progeria(20 of20)

According to the Mayo Clinic, only around 130 cases of this devastating genetic disorder have been documented since it was discovered in 1886. Affected babies normally appear normal at birth, but within 12 months begin to have symptoms like hair loss and wrinkles. According to the Mayo Clinic, progeria is caused by a genetic mutation, but not one that's passed down through families; it's a chance event that affects only one egg or sperm. The average life expectancy for sufferers is 13.

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