A woman has opened up about what it’s like to live with Stiff Person Syndrome (SPS) with spasms so severe they can break her bones.
SPS is an incurable neurological condition that causes terrifying and often violent muscle spasms – and it’s the same condition that forced Celine Dion to cancel her upcoming tour late last year.
Now one brave patient, 24-year-old Rose Merrill, has spoken out about how her symptoms first appeared when she was just 12 years old, when doctors had no answers for her.
It wasn’t until two years ago that the Colorado native was finally diagnosed with the extremely rare neurological condition.
A woman has told what it’s like to live with Stiff Person Syndrome (SPS) – with spasms so severe they can break her bones
Rose Merrill’s symptoms first started appearing when she was just 12 years old. It wasn’t until two years ago, now 24 years old, that the Colorado native finally received a diagnosis
Unfortunately, doctors have said that Rose’s condition will worsen over the years. She is supported by her family, including her mother, Melissa, 59, and boyfriend, Blayze, 26 (pictured)
The relief of getting an answer was short-lived, as the former assistant zookeeper struggles with most daily tasks – having been forced to quit her job and miss out on a ‘normal’ life.
“When I was diagnosed, I thought this was the start of getting ‘better,’ but I was devastated when I realized this wouldn’t be an option for me,” said Rose, who shares her experiences on social media .
‘There is no cure and treatment is minimal and often loses effectiveness over time.
“I was so angry – after fighting to get answers, (going to) countless doctor appointments and (dealing with) all my pain, there was still no solution.”
Doctors treat SPS patients with medications such as muscle relaxants to relieve symptoms.
Patients may also experience irregular heartbeat, low or high blood pressure, urinary tract problems, breathing problems and vision loss.
For Rose, the spasms are very bad and can be so severe that they break her bones, and she also has a catheter and feeding tube.
“I struggle with almost everything,” she admitted.
“My family are so supportive, my boyfriend (pictured) and mother are my main caregivers and help me with dressing, showering, cooking and everything else,” she said
‘My spasms hurt terribly and I suffered terrible injuries.
‘I once broke a vertebra in my back and another time I got a cramp while ironing and got a third-degree burn on my leg.
‘I barely remember anything except screaming and not being able to move the iron off my leg.
‘I also have a catheter and a feeding tube, which is very uncomfortable or even painful, and I always feel so different when I have a trachea and a ventilator.
‘Some days I wish I could just look ‘normal’.’
Rose has also been forced to leave the job she loved.
“I miss working at the zoo,” she admitted.
‘I also struggle with leaving the house alone or being as independent as I would like.’
In addition to the prescribed medications, she uses heating pads and does specific massages to loosen her muscles.
Although it can be mentally exhausting to live in 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 instead of what she can’t.
“Every time I make a little bit of progress, I feel incredible and I’ve done things I never dreamed I would do when I first became disabled,” she explained.
“My condition is said to be worsening and my prognosis is premature death,” she admitted
‘I like sewing as a distraction, but I’ve also had the chance to do adaptive cycling and rock climbing.
‘Adaptive cycling felt great because I was able to use my incredible muscle strength instead of it hurting me.
‘I loved climbing before my disability, so it felt so liberating to be able to do it again.
‘I do adaptive climbing, so someone helps me hold my weight while I move slower.
‘I’m also in the process of purchasing a specialist swimming float so I can get back into the water. I’ve heard that being in the water almost feels like you’re not handicapped.’
Unfortunately, doctors have said that Rose’s condition will worsen over the years.
She is supported by her family, including her mother, Melissa, 59, and boyfriend Blayze, 26.
“My condition is said to be worsening and my prognosis is premature death,” she admitted.
‘However, it is difficult to predict when, as it is usually the result of complications such as blood clots, infections, pressure sores or breathing difficulties.
‘I now use a wheelchair to get around and a walker for short distances.
“Every time I make a little progress I feel incredible and I’ve done things I never dreamed I would do when I first became disabled,” she explained
‘My family are so supportive though, my boyfriend and mum are my main carers and help me with dressing, showering, cooking and everything else.’
Blayze and Rose have been together for two years and often talk about her condition and future plans.
“We know we have to adapt and have more equipment,” she explained.
“He’s trying to get medical school to take care of me and we’re trying to get a mobile home so we have room for something like a hoist.
‘We plan as much as possible for the future.
‘He says who I am makes up for all the suffering my condition brings, but he will be devastated if he loses me.
“We also talk about my death and what I want.”
Rose is constantly adapting to new ways to get around and live her life as smoothly as possible, which can be a struggle.
‘I have reached thousands of people and educated the public on my social media about SPS. “I also helped my doctor organize a webinar to educate more people,” she said
But she is determined to achieve the dreams she can and is sharing her story to raise awareness and take comfort in the fact that she can help others who have been diagnosed with SPS.
“I have reached thousands of people and educated the public on my social media about SPS,” Rose said.
‘I also helped my doctor organize a webinar to educate more people.
“And I made great friends, moved out of my house and fell in love.
‘This will be a lifelong struggle for me with many ups and downs.
‘I’m learning to adapt and becoming much mentally stronger than ever before.
“My condition can be very frustrating, but it has also introduced me to wonderful people and made me realize what a blessing life is.”
One of the most notable patients with SPS is Celine Dion.
The 54-year-old singer addressed her fans in a tearful Instagram post last December when she revealed she had forced her to postpone her European tour.
She wrote: ‘Hi everyone, I’m sorry it’s taken me so long to get back to you. I miss you all so much and can’t wait to talk to you on stage in person.
“As you know, I’ve always been an open book and wasn’t ready to say anything before, but now I’m ready.
‘I have been dealing with issues with my health for a long time, and it has been very difficult for me to face my challenges and talk about everything I have been through.
‘I was recently diagnosed with a very rare neurological condition, stiff person syndrome, which affects one in a million people.
‘While we are still learning about this rare condition, we now know that it is the cause of all the spasms I have had.’