My stiff person syndrome spasms are so severe they can break my bones – I live in constant fear every day

A WOMAN has shared what it’s like to live with stiff person syndrome — with spasms so severe they can even break her bones.

Rose Merrill, 24, from Colorado, first started experiencing symptoms when she was just 12 years old, but doctors had no answers for her at the time, she said.

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It wasn’t until two years ago that she was finally given a diagnosis of the extremely rare neurological disorder, which is also suffered by Celine Dion.

The relief at having an answer was short-lived, as the former assistant zookeeper struggles with most daily tasks.

She was forced to quit her job and is missing out on having a ‘normal’ life, she said.

Rose said: “When I was diagnosed, I thought this was the start to getting ‘better’ but I became devastated as I realised this would not be an option for me.

“There is no cure and treatment is minimal and often loses effectiveness over time.

“I was so angry — after fighting to get answers, countless doctors’ appointments and all of my pain, there was still no solution.”

Stiff person syndrome (SPS) affects around one in a million people, according to the National Organization for Rare Disorders.

It causes muscles to become stiff over time and painful spasms.

Patients can also suffer from irregular heart rate, low or high blood pressure, urinary issues, breathing problems, and vision loss.

Experts are not sure what exactly is behind the condition, but some research has suggested it may be an autoimmune disorder, when the body’s natural defences attack healthy tissue.

Doctors treat SPS patients with drugs like muscle relaxants to relieve symptoms.

For Rose, the spasms are very bad and can be so severe they break her bones — and she also has a catheter and feeding tube.

She said: “I struggle with almost everything. My spasms hurt horrifically and I have obtained horrible injuries during them.

“I broke a vertebrae in my back once and, another time, when I was ironing I had a spasm and got a third-degree burn on my leg.

“I hardly remember anything apart from screaming and being unable to move the iron away from my leg.

“I also have a catheter and feeding tube, which is very uncomfortable or even painful, and I always feel so different having a trachea and vent.

“Some days, I wish so badly that I could just look ‘normal’.”

Rose has also been forced to leave the job she loved.

She said: “I miss working at the zoo. I also struggle getting out of the house on my own or being as independent as I’d like.”

In addition to prescribed drugs, she uses heat pads and does specific massages to help loosen her muscles.

My spasms hurt horrifically and I have obtained horrible injuries during them.

Rose Merrill

While it can be mentally draining to live with constant pain and not be able to do the things she once could, Rose remains as hopeful as possible — focusing on what she can do versus what she can’t.

She said: “Whenever I make a little progress I feel incredible and I have done things I never dreamed I would do when I first became disabled.

“I love to sew as a distraction but I have also had the opportunity to do adaptive cycling and rock climbing.

“Adaptive cycling felt amazing as I could put my incredible muscle strength to good use instead of having it hurt me.

“Before my disability I loved climbing, so being able to do it again felt so freeing.

“I do adaptive climbing, so someone helps me with holding my weight while I move more slowly.

“I’m also working on getting a specialised swim float so I can get back in the water, as I have heard that being in the water feels almost like you’re not disabled.”

Sadly, doctors have said that Rose’s condition will worsen over the years.

She is supported by her family including her mum Melissa, 59, and boyfriend Blayze, 26.

Rosie said: “My condition is said to get worse and my prognosis is premature death.

“It is hard to predict when though, as it is usually the result of complications such as blood clots, infection, bed sores or breathing struggles.

“I now use a wheelchair to get around and a walker for short distances.

“However, my family is so helpful, my boyfriend and mum are my main caregivers and help me with getting dressed, showering, cooking and everything else.”

‘LIFE-LONG STRUGGLE’

Blayze and Rose have been together for two years and often talk about her condition and future plans.

She said: “We know we’ll need to adjust and have more equipment.

“He’s trying to get medical training to take care of me, and we are trying to get a mobile home so that we have space for things like a hoist.

“We are planning for the future as much as possible.

“He says that who I am makes up for all the suffering my condition entails, but he will be devastated when he loses me.

“We also talk about my death and what I want.”

Rose is constantly adapting to new ways of getting around and living her life as smoothly as possible, which can be a struggle.

But she is determined to fulfil her dreams and is sharing her story to raise awareness, taking comfort in being able to help others who have been diagnosed with SPS.

She added: “I have reached out to thousands of people and have been educating the public about SPS on my social media.

“I’ve also helped my doctor put on a webinar to educate more people.

“And I have made amazing friends, I have moved out of my home and fallen in love.

“This will be a life-long struggle for me with lots of ups and downs.

“I’m learning to adapt and growing mentally much stronger than I ever have been.

“My condition can be very frustrating but it has also introduced me to incredible people, and made me realise what a blessing life is.”

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