Rare Disease Day is an important international awareness day that takes place annually on 28 February (or 29 February in leap years). Our secretary, Mindy, has chosen to use the day to tell us her personal story about living with a rare neurological condition.

❝I became disabled by transverse myelitis in late 2015, with a growing list of unexplained symptoms. The first significant difference I noticed was my balance and walking. I kept falling over, or as it increased in severity, what the paramedic described as “having a fall.” I struggled to lift my left leg and had foot drop. Along with difficulties walking, I was also experiencing weird sensations and disabling pain. It took longer than it should have for me to go to the doctor and tell them something was wrong. Maybe not knowing was a way of shielding myself from bad news. 

In day-to-day life, I was not managing well at work, taking time off because of spasms, pain, and fatigue. I loved my job, and I worked hard to make sure that I could cover my tasks. But I often fell short of what I had hoped to achieve. Without Access to Work I would not have been able to go to work at all. For example, they paid for my taxis to and from work and provided me with office furniture to support my spine. Regardless of the support I was receiving from my employers and Access to Work, I was still taking a lot of time off work because of pain and fatigue. 

Because of my struggle with walking, I could no longer take long walks in the Yorkshire countryside. I was and still am devastated by the loss of my ability to walk far. Clambering over dales and off the beaten track was a great love of mine. 

When my work contract ended, I took the hard decision to leave employment. I found it difficult to do my job when pain and fatigue had disabled me to such a great extent. I was unable to work long hours, I was often late because of my condition, and had taken too many sick days. I want to work; I want to earn my own money, but the reality was that I could not.

Whilst this was happening, I attended many appointments with neurology consultants. Bloods taken, MRI scans, a lumbar puncture, visual evoked potentials, neuro-physio, long waits. I have read plenty about neurological conditions and what all the tests are for. Diagnosing the problem becomes difficult when it is situated deep inside your spinal cord. But after several years of tests and consultations and the elimination of other conditions, I had a potential diagnosis. Transverse myelitis. 

There is a reason you have never heard of it. Transverse Myelitis is a rare neurological condition. Experts estimate that about 300 new cases occur in the UK each year. To put that into context, doctors diagnose 18,000 people with Parkinson’s disease every year. 

My life has changed, and I am no longer able to do the things I loved doing. But I have always been a person who wants to give and be an asset to society. I have been a volunteer for various charities for most of my adult life and decided I would continue to do so. I knew that I did not have the stamina anymore and could not rush around like I used to. This was not going to stop me from giving what time I could. I have a wealth of experience and knowledge that I was not prepared to waste. If I could spend a couple of hours here and there with my laptop, then I could be of use. 

Volunteering gives me the opportunity to do something valuable but also gives me flexibility. This flexibility is important. I can volunteer from home. I can do only what I am capable of without the working day or week beholding me. This means managing my pain and fatigue is stress-free. 

Kirkstall Art Trail wanted to recruit new volunteers to help organise the yearly event. I (metaphorically) jumped at the chance. I was able to offer my knowledge and expertise and living in Kirkstall I did not have to go far to do this. We have a meeting every fortnight. We meet in a house nearby and the other committee members are supportive of me. Offering me a lift there and back if I have fatigue and my legs are not working. I enjoy the meetings, as it gets me out of the house and seeing people. 

My input is online. I manage the website and send out emails. I can dip in and out of this work. For example, putting the website together very slowly, over several months. Had I not been disabled, I reckon it would have taken me a week or two to do. But I am not doing this all alone; there is plenty of help from the other organisers; we work well as a team and pick up the slack from each other. 

Because of my disability, I have been keen to make sure that we put accessibility into everything we do, where we can. It is important that we make space for disabled people, whether they are volunteers, artists, or visitors. I recognise that the Art Trail is not 100% accessible and never will be, but it does not mean we cannot make adjustments if we can. Becoming disabled has helped me see the world from a vastly different perspective. Organisations need to have those perspectives to make inclusion a reality. I hope I bring that to the Kirkstall Art Trail team. 

Volunteering for Kirkstall Art Trail has given me a strong connection to my local community. And volunteering has given me a real purpose.❞

Image credit: Genetic Alliance UK.

If you cannot read the infographic, the original Genetic Alliance UK PDF is linked above.