I have the same disease as Celine Dion - the one in a million stiff person syndrome - this is the horrifying reality

Last month, philharmonic fable Celine Dion gave fans a heartbreaking glimpse into her life pinch a one-in-a-million information successful her revealing documentary, I Am: Celine Dion.

Viewers were moved by disturbing scenes of her agonizing seizures that time off her stiff for up an hr — a denotation of nan incurable Stiff Person Syndrome, which Dion revealed she was suffering successful December 2022.

The condition, triggered by nan immune strategy attacking nerves, causes achy musculus spasms, seizures and leaves sufferers struggling to move because of pain.

Now, 2 patients person been inspired to stock their ain acquisition pinch nan condition, describing really it almost drove them to termination and near them hardly capable to move for days connected end.

Carrie Robinette, 45, from San Diego successful California, revealed she had been sick for years earlier doctors yet diagnosed her information — and is now mostly stuck astatine location incapable to move further than 50 feet without aid.

She suffers spasms that tin past up to an hour, and says it often isn't moreover worthy going to nan infirmary because doctors don't cognize really to thief her.

Corwyn Wilkey, 44, from Alaska, said nan first signs of his information were nan aforesaid arsenic Celine Dion's — pharynx spasms.

He described nan test arsenic a 'death sentence' that had led to nan breakdown of his matrimony and had costs him his home, his livelihood and, for a time, his children.

He besides said it had driven him to effort termination because he felt for illustration a 'burden' connected his family.

'I was honestly "always sick",' Ms Robinette told Fox News digital. 

'Even arsenic acold backmost arsenic precocious school, I had incredibly tight muscles successful my legs, and location were countless times that I woke up crying pinch spasms successful my calves.'

Doctors antecedently put her symptom down to asthma and allergies and diagnosed her pinch kidney issues.

But past successful May past year, aft she besides began to suffer full-body spasms, doctors ordered tests for SPS.

Doctors execute a myriad of tests to look for nan condition, including a humor trial to observe nervus cell-fighting antibodies and an electromyography to measurement electrical activity successful muscles.

Ms Robinette describes her regular life arsenic a struggle pinch nary extremity successful show — because treatments, for illustration immunosuppresants, person not helped.

'This past twelvemonth my family and I person really been put done nan wringer,' she said.

'It takes a toll to consciousness for illustration you are successful a aesculapian situation and yet cognize that moreover if you spell to nan hospital, nary 1 will thief you.'

She has now started to suffer from spasms that past for up to an hour, and she says connected bad days she cannot move without nan thief of a cane aliases walker.

On others, however, she says she tin locomotion and move 'almost for illustration normal' — though she still needs nan assistance of a mobility chair to recreation further than 50 feet.

SPS is an autoimmune neurological upset thought to beryllium caused by nan assemblage attacking its ain nervus cells, triggering nan spasms.

About two-thirds of nan patients are women, and astir are aged betwixt 30 and 60.

Warning signs are terrible musculus stiffness and achy musculus spasms that tin past for up to an hour.

But successful later stages, these spasms whitethorn go truthful bad that they tear tissues aliases break bones.

The information is agonizing but not fatal. Patients tin dice from complications related to it — specified arsenic humor clots, coiled infections owed to immobility or, successful utmost cases, spasms successful nan thorax muscles that time off patients incapable to breathe.

Sufferers thin to person different autoimmune conditions specified arsenic type 1 diabetes, vitiligo and pernicious anemia — wherever nan assemblage struggles to sorb vitamin B12 which is captious for reddish humor compartment production.  

Mr Wilkey utilized to singing regularly successful a section set and was besides moving astatine Alaska State Park arsenic a media publications specialist.

But his pharynx began to tense respective years agone erstwhile he tried to sing, likewise to Celine Dion.

After a artillery of tests, successful 2021 he was yet diagnosed pinch SPS by nan Mayo Clinic — but not earlier it had disrupted his life.

Mr Wilkey said nan information had turned him into a 'raging monster' which yet led to nan breakdown of his marriage. 

While nan information is not thought to straight origin anger, nan accent associated pinch it whitethorn good trigger nan emotion.

Describing his diagnosis, Mr Wilkey said it felt 'very overmuch for illustration receiving a decease sentence'.

'I became incapable to usability [because of nan disease] and felt for illustration a load connected my family, which led maine to effort suicide.

'I mean... I mislaid everything — my marriage, each my money, my home, and moreover my children for a time.'

He was hospitalized aft his test and has gone done intensive therapy and symptom rehabilitation programs.

He has besides struggled pinch depression, PTSD and analyzable location symptom syndrome — aliases erstwhile a diligent has long-lasting symptom and inflammation successful nan body.

On his conflict today, he said: 'The astir salient beingness challenges are musculus stiffness and rigidity, seizure-like musculus spasms, cognitive distortion and decline, chronic symptom and fatigue, PTSD, nonaccomplishment of coordination and good centrifugal control, headaches, associated pain, backmost pain, and inability to coordinate my assemblage nan measurement I want to.'

Medications for patients see taking oral musculus relaxers aliases immunosuppressant narcotics to thief negociate nan symptoms.

Researchers are besides presently moving connected a caller therapy, called KYV-101 and made by Kyverna Therapeutics successful San Francisco, which they opportunity could 'reset' nan immune strategy — stopping it from attacking nerves.

Dr James Chung, nan main aesculapian serviceman down nan treatment, said: 'This attack could perchance connection a much targeted curen that addresses nan guidelines origin of SPS alternatively than conscionable managing symptoms.'

The supplier has precocious been approved to participate Phase Two Clinical tests but is apt still astatine slightest a twelvemonth distant from being disposable to patients.