A man diagnosed with the same one-in-a-million condition as Celine Dion has told how it's left him unable to hug his family or live independently. Dominic Alderson, 49, was diagnosed with Stiff Person Syndrome (SPS) in April 2021 after he started suffering from "horrific" spasms.
Before his diagnosis, Dominic lived a "normal, healthy life" with his wife, Leann, 45, a social worker, and two children - Rebecah, 16, and Harry, 15. The dad-of-two was sent for tests where he was seen by a neurologist who identified his symptoms as SPS.
Since his diagnosis, Dominic has been left unable to do many of the activities he previously could such as driving, cleaning, cooking, and walking the dog - and is even unable to hug his family. The rare, progressive neurological disorder causes stiff muscles in the torso, arms, and legs. It can also lead to a higher sensitivity to noise, touch, and emotional distress - which can set off muscle spasms.
Celine Dion announced she suffers from the condition - which affects roughly one or two out of every million people. It has caused the singer to postpone dates for her European tour next year. Dominic, a battery operative, from Barnstaple, Devon, said: "I can't do a lot of the things that I did.
"One thing about SPS is it is a neurological disorder similar to multiple sclerosis - you can have good days and bad days. On the good days, you can do a lot but on the bad days you are spasming all day.
"I have fallen down the stairs, fallen in the kitchen - it is not just the spasms there is a rigidity that comes with it. My legs lock, my top thighs will be trying to push outwards, and my calf will be trying to push inwards.
"I can't hug my wife or children, even if someone brushes against me - I start to spasm."
Dominic was first diagnosed with SPS in April 2021. Despite it only affecting approximately one in 200,000 individuals, fortunately for Dominic the doctor had seen it once before in his career - meaning he had a rare early diagnosis.
Dominic said he first started noticing symptoms at the start of the pandemic when he stopped going to the gym. He said he would have sudden bursts of energy before going to sleep and he would start twitching on the way home from work.
Dominic put all this down to the fact he stopped going to the gym - something he would do five to six times a week before lockdown. Until, one night he got home from a night shift, climbed into bed and started spasming.
Dominic said: "I thought it was covid, I went to the doctor and my body was raising off the seat - due to spasms and my arms would cramp up. When they saw me, they sent me straight to the hospital."
In April 2021, Dominic spent two weeks at the Royal North Devon Hospital where he was given the diagnosis of SPS.
While he was there, he was given MRI and CT scans and had his bloods taken. He also underwent two treatments of intravenous immunoglobulins - a therapy treatment for patients with antibody deficiencies.
On 26th May 2021, Dominic was admitted back to hospital as an emergency precaution due to an exacerbation of his condition. Dominic said: "I am married with kids. For me, what was going through my head, I thought I was going into hospital with something, and they would cure me.
"I was a fit person - I would walk my dogs, go to the gym, I used to play golf. I was a football coach. I was very active - it was a shock.
"Again, I was admitted into the hospital on 5th June 2021, due to and the next day I was sent to the Royal Devon and Exeter Hospital where I was put under observation. I was given plasma exchange - where blood is removed from the patient and separated so that the plasma can be discarded.
"I was then discharged on 18th June 2021 and given medications to try and control my condition."
The medications Dominic was put on include muscle relaxants, steroids and immune suppressants to help stop his uncontrollable spasming. The disease has completely changed his life - meaning he can no longer do the daily activities he was used to doing beforehand.
He said: "I am at a higher risk of falling over and there is a 40 percent chance of me being in a wheelchair. I already use a stick around the house, I use a poll to go outside too and that helps.
"I can't go into shops because of the artificial lighting, any artificial lighting will set me up in spasms. I can't hug my wife or children, even if someone brushes against me - I start to spasm.
"I have lost all my freedoms. It is my wife that gets it all in the neck, she does a lot for me and so do my kids."
Dominic said it is "great" that a household name like Celine Dion has opened up the conversation around SPS. He said: "I was reading about Celine Dion and how bad it must be for her especially her being a performer.
"We all know performing live will be very, very hard for her. I am sure with the hard-working woman she is that she will be back in the studio recording when she gets familiar with the condition."
