In 2015, the Canadian singer-songwriter's father, Greg, was diagnosed with a rare form of muscular dystrophy called FSHD. She took the time to share how her father's experience has impacted her and her family, and inspired her professionally.
Patient Voice chatted with Canadian singer-songwriter Lilianna Wilde to discuss her personal experience with rare disease, the lessons all Canadians can learn from stories like her father’s and why everyday kindness is so important.
LW: I didn’t find music until my mid-20s. I moved to L.A. after I finished my studies at Wilfred Laurier University to spend what initially was only going to be a year exploring a new city, new ideas and new pathways. I ended up falling into songwriting and I felt so passionately about it that I realized there wasn’t anything else I could see myself pursuing.
LW: My dad was diagnosed with FSHD (facioscapulohumeral muscular dystrophy) in 2015. He had experienced years of pain with no explanation — just ongoing tests, being undiagnosed and misdiagnosed, and dead ends. Most doctors tested for what they knew and didn’t bother to look any further, often saying that it was nothing to worry about. It was really the tenacity of my mom who consistently researched, asked questions and put pressure on doctors to continue to refer him to different specialists that resulted in him finally getting to a genetics clinic that helped arrive at the diagnosis. If your body is telling you that something is wrong, be persistent. Just because the first or second or third doctor can’t arrive at a diagnosis doesn’t mean you should give up. Where possible, I also think it can really help to have an advocate with you — a friend or relative who can be there with you for appointments and testing. If they can take on some of the burden of fighting for you, it makes it a little easier to handle.
LW: At the beginning there was so much we didn’t understand, which turned into a ‘worst-case scenario’ mind game. I was often up all night imagining terrible outcomes and going down internet black holes that sucked me into devastation. When we started to do more research and discuss the diagnosis with doctors, we found a lot of hope. On one hand, FSHD is rare and incurable as well as debilitating and painful. On the other hand, life expectancies are still very long. FSHD progresses slowly and can be less severe than other forms of muscular dystrophy. The diagnosis led to deeply conflicting emotions — we felt angry, hurt and confused, yet we also felt grateful that the severity could be managed and optimistic about ongoing research.
LW: In some ways, the diagnosis gave my dad relief that there was an answer — that the pain and deterioration weren’t something he was imagining. On the other side of the coin, a diagnosis that doesn’t have a cure can be overwhelming. We have an answer, but now what? Where do we start when there’s no finish line? But with an explanation for the pain and an understanding of what was happening, he was able to start looking for relief, even if it’s temporary, with treatment.
Every day is different and in constant ebb and flow. Some days he can still do a lot of the things he loves, albeit slower and with more pain than others might. Other days, he can’t get out of bed without assistance — the pain is so insurmountable that his whole body aches, he feels like he’s walking on pins and needles, and it hurts too much to even stand. He does the best he can within the circumstances. Everyone is unique, so that best is going to be very different for everyone.
I think the best thing we can do as family members and friends is be flexible for our loved ones — to let them have the autonomy to decide how they want to live with their diagnosis and to be there to support their needs and wishes and to encourage them.
LW: I’ve always respected how hard my dad works. He’s an aggressive, creative entrepreneur with a work ethic like no other. He slept under his desk while building his business. His work was difficult and backbreaking under any circumstance, let alone with muscular dystrophy. He has always been a figure I look to as an example of tenacity and dedication. I know that work-centric life isn’t for everyone, but it’s shaped me. I think that my effort to be like him and to not let him down has made me very much like him. With or without the diagnosis, he’s an inspiring man.
LW: Like most Canadians and their families dealing with a rare disease, while we don’t have a magical cure for my dad’s disease, we do have an opportunity to manage symptoms while research continues. My mother remains the primary researcher, looking for treatments and care. My dad is incredibly open to holistic and Eastern medicine as well, especially for pain management.
LW: At the most intimate level, rare diseases could be affecting you or someone you love, and the more we know about them as a community, the quicker and more effectively we can land on proper diagnosis and therefore treatment or management. Even if you aren’t personally affected by a rare disease, just the understanding that other people are living through it could make us all be a little kinder to each other. Rare diseases are often invisible, and people can be so quick to default to negative snap judgments without considering the possibility that someone might be silently suffering — the pedestrian who’s taking just a little too long to cross the street, the neighbour who’s secretly doubling as a caregiver or the friend fighting an internal battle who might not always be able to be there to help fight ours. If we take time to consider that so many Canadians and their families are quietly struggling with a rare disease, we might all make life a little easier for each other — friends and strangers alike.