Why people living with Stiff Person Syndrome need to be heard

Aug 14, 2026

I watch someone I love be imprisoned in their own body. Stiff Person Syndrome isn’t just “stiffness”

This week’s blog is from Andrea, whose husband Ian lives with Stiff Person Syndrome (SPS). She shares their experience of living with the rare condition, and calls for a group effort to improve the lives of those with SPS.

Ian’s experience of Stiff Person Syndrome

It’s a body that seizes without warning. Muscles slam tight like iron bands. Spasms strike like violent storms, ripping, tearing, straining, pulling muscles to breaking point and fracturing bones. And then, it doesn’t stop.

After the spasm the body locks again. Rigid, unyielding, incapable of responding. They can’t move. Cannot speak. Cannot even open their eyes and when they eventually open their eyes their eyes can be locked in place unable to move up, down, side to side so it affects vision too. I have to watch in complete silence. Watching their helplessness.

A life like a rigid statue in a body that is a prison. What dismays me is that the world minimises this condition. Society looks the other way because actually seeing this condition in person is too uncomfortable for people to view or they can’t understand it.

It becomes an inconvenience to people and this makes me want to scream at the cruelty of this disease. At the silence that allows it to go ignored. At the people who think that survival is enough. It’s not. It’s a war in a body that becomes a battlefield betraying the person within.

Treatments are like walking into the dark abyss. They demand a courage most cannot comprehend. Each infusion, each medication is a step into the unknown. Will it help or will it make things worse? There are no answers.

For Ian, it’s taken many steps on a pathway strewn with difficulties. We’ve had ambulance crews turn up who have never heard of the disease and don’t have a clue how to approach him.

Hospitals are hazardous environments and unfortunately the professionals who are to administer the infusions lack experience. An SPS body triggers at touch, movement, temperature changes and sudden noises.

Image of Ian walking with a walking frame

Turbulent treatment experiences

On Ian’s first visit for an infusion the staff were incredulous when we asked for a bed and told me I wouldn’t be able to stay with him. They rapidly changed their minds and that first infusion was postponed because they simply were not prepared to administer it appropriately.

He is due to have more chemotherapy soon and several years in, it will mean telephoning ahead to check he has a bed booked and you can bet on arrival they will want to know why he’s needing a bed? He ended up having the treatment on a bed in a store cupboard one time. Another treatment he attempted a few years ago caused a rapid decline in his condition. It’s a risk you take.

SPS is like a thief that comes in the night and tears up the rule book, yet Ian was never sat down and given an official diagnosis.

He was merely told that some of his symptoms would be due to the fact he has Stiff Person Syndrome. He had had symptoms for over 30 years with many different diagnoses yet he wasn’t told of his diagnosis when it was added to his patient file.

He had been a patient at that hospital for over 20 years. When did they diagnose this? We don’t know!

Raising awareness

On one of the occasions his lungs were squeezed and his throat had closed off with the spasms and we had to call the emergency services. This was a catalyst that made us reach out to try and alert medical professionals about this condition, to improve their understanding and we set out to raise awareness on social media.

Little by little I contacted people diagnosed and asked them if they would be willing to come onboard and help us to raise awareness of this brutal, catastrophic condition.

I wanted to make a point that yes it’s a one in a million diagnosis but there are over eight billion people in the world and now after creating reels to improve awareness over the last few years I have around 20 plus people who have sent photos or short videos to become part of the reels or to try and give informative posts on my platform to help people understand their condition.

We are in contact with people from the UK, France, Spain, USA, Brazil, Australia, Lebanon, Norway, Canada, Turkey, Finland, India, Netherlands and Sweden and it’s been very encouraging.

Due to the triggers of the disease it is so isolating. People become cut off from their friends, their families and have to live a very secluded life. It’s been reassuring and heartwarming to hear from others that no longer feel they are alone.

So we continue to try and make the invisible visible.

Sign the petition

We have recently launched a UK Parliament petition calling for improvements in the care and treatment of people living with SPS, including access to diazepam nasal spray, a medication already available in several other countries that has the potential to make a life-changing difference during prolonged and severe spasms.

One of the reasons we are campaigning so passionately for access to nasal diazepam is because, once a severe spasm begins, many patients lose the ability to swallow safely.

SPS does not simply affect the muscles of the limbs and trunk. The muscles of the oesophagus and larynx can also go into spasm, making swallowing impossible and significantly increasing the risk of choking or aspiration.

At precisely the moment patients most desperately need medication, oral tablets may no longer be an option. A nasal formulation bypasses swallowing altogether and could help bring prolonged neurological crises under control before they escalate.

Some patients experience prolonged, relentless full-body spasms that develop into “status spasticus” , a neurological emergency that can become life-threatening.

During these crises the spasms can involve the muscles responsible for breathing and swallowing, leading to respiratory distress and leaving patients unable to communicate, move or take oral medication.

Some remain trapped in excruciating pain for many hours, requiring emergency intervention, and tragically some do not survive these episodes. We have lost several friends globally to this condition. These realities remain largely unseen and poorly understood.

Living with SPS is therefore far more than coping with muscle stiffness. It is a condition that can strip away independence, dignity and, in some circumstances, threaten life itself.

Sign the petition

Our local MP has also written to the Department of Health and Social care in support of our efforts.

We more than anyone, recognise that a signature isn’t simply a name, it’s a voice calling for change, better access to treatment and more research, as well as giving hope to those living with this devastating condition.

We are not asking for sympathy. We are asking for understanding, equitable treatment and the opportunity for people living with SPS to receive the safest, most appropriate care possible. Rare diseases collectively affect millions of people, yet those living with the rarest conditions often remain invisible. Awareness is only the beginning; meaningful change must follow.

Together we can help change lives, one signature at a time.

Watch their story on ITV

We were fortunate enough to be contacted by ITV’s Calendar news programme who wanted to support my husband and our campaign to help raise awareness of SPS as well as highlighting the need for the medication we hope to attain.