Below the surface
Posting date:10/7/2020 2:07 PM
Throughout October, as part of National Inclusion Week and SNC-Lavalin’s first-ever global ED&I month, we speak with four colleagues who are living with a hidden condition to help shine a light on their experiences and what we can all do to support them.
This week, we’ve spoken to Aoife Gallagher, who is an assistant electrical engineer in our Nuclear business. She joined us in 2015, the same year she was diagnosed with a rare condition called Action Myoclonus Renal Failure (AMRF). In our short interview below, Aoife talks about her rare condition and its effects on her personal and professional life.
Aoife, what can you tell us about your condition and how you were diagnosed?
I was officially diagnosed with AMRF after being tested in April 2015, but I had been noticing symptoms for years before that without knowing why.
AMRF causes episodes of involuntary muscle jerking or twitching (myoclonus) and often kidney (renal) disease. This means that when I try to do something such as tie my shoelaces or use cutlery, my arm muscles will contract or jerk. This has developed since I first noticed the tremors and jerks, and I’m now on three different types of medication to try to control it. The movements can be painful, and I often get cramps and muscle fatigue from trying to fight against my body.
Although the name of the condition also refers to kidney disease, not everyone with the condition has problems with their kidney function. Unfortunately, my kidneys stopped working and I had to have a kidney transplant. I have the only known case in the UK and Ireland.
How does your condition affect your personal and professional life?
I have ‘good’ days and ‘bad’ days, and the bad days unfortunately are only getting worse. I can be happily out walking with my son but then have a jerk or spasm in my back or leg, which will cause me to fall, and I’ll be frustrated and in pain for days after. My friends and family do their best to understand. For my hen do, for example, we had a night in because the girls understood I don’t cope well in new places; uneven floors or bumping into things can set me off balance.
Professionally, the business, and especially my team leader, have been very understanding and accommodating. I have speech to text software installed on my computer in case my hands and wrists start to cramp or misbehave. On a bad day, it can take up to six attempts for me to get my password right.
Are there challenges you’ve noticed in the workplace that you’ve had to adjust to as a result of your condition?
I mentioned the software, which is a massive help. I’m also getting a new chair if I ever go back to the office. Because I’ve had a kidney transplant, I’m on immune suppressant medications that make me much more susceptible to coughs and colds, and a flu can easily hospitalise me as a result of that. So, making sure my team is aware of my condition and encouraging them to stay home if they’re unwell can be a challenge – all before COVID-19 of course.
Has the COVID-19 pandemic had an increased impact on you as a result of your condition?
I’m on the Government’s shielding list, which means I was advised not to leave my home in the first 12 weeks of the lockdown. Now they’ve extended that, and I think I can go for walks but not to shops.
I do take my son to and from our child minder, but even him going there is against the guidelines. I tried to work from home and look after him at the start of the lockdown, but it wasn’t good for either of us!
How does your illness impact your home life, and what are some of the things you rely on to cope?
Sometimes, if I’m up to it, we go for lunch and to the park on a Saturday, and then I’ll be on the sofa all day Sunday. Sometimes, if I’ve had a particularly painful day or have hurt myself falling, I can be on the sofa for a week.
Because I only developed this condition as an adult, my husband has had to take on the role of a carer a lot earlier than anyone would’ve expected. He’s had to take on a lot of the household chores as well such as cooking and shopping. Although we do enjoy nights out when we can, we’ve both had to learn that I just do not recover like I used to. I consider myself a ‘spoonie’: a person living with a chronic illness, invisible or not, who has to make sacrifices to try and get through each day, either with time or energy.
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