Back in 2009, I had just finished my Master’s degree and had recently gotten engaged. I was also starting a brand new job. So when I developed a stomach ulcer and a rash on my hands and arms, my friends and family—even my family doctor—chalked it up to stress. But I didn’t feel stressed, I felt really happy. I was just so tired, all the time.
It wasn’t until I got a rash on my face that I started looking things up online. I work in the field of health research, with access to great doctors, but I ended up doing what anyone would do: I Googled it. That’s when I asked my doctor to refer me to a dermatologist.
It turns out that the butterfly-like skin rash across my cheeks and bridge of my nose was a tell-tale sign of lupus. In retrospect, I had been having symptoms for years: fatigue, rashes on my arms, and ulcers, but it took me a long time to accept my diagnosis. I didn’t initially listen to my body and that only hurt me more.
Like it is for 1 in every 1,000 Canadians, I slowly had to learn to live with this complex condition. I had to teach myself to listen to my body when it told me it was time to slow down. Last year I was having a conversation and suddenly the most bizarre thing happened—I forgot the question the person had just asked me. It was my first experience with short-term memory loss from lupus. It’s one thing to be tired or sore, but losing control over the mind is different. Thankfully it’s not long-term loss like dementia, but it was still terrifying.It made me focus on what I can do to stop the most severe symptoms from coming on. It made me want to do more.
When I was first diagnosed, I felt lost and I didn’t feel like I could relate to anyone. Then I heard about a position on the Board of Directors for Lupus Canada, and I knew there was something I could do about it. Do you know what the biggest change was for me? Learning to ask for help.
As someone who lives with this chronic disease that can target any tissue or organ of the body, I face so many unknowns from day to day. Will I have skin problems, pain in my muscles or joints—will my blood vessels, my lungs, heart or kidney be under attack today?The unknowns of this disease is why research is key. That’s why I’m so excited to share with you Lupus Canada’s plans to fund new research—making sure that patients come first.
Earlier this year, Lupus Canada launched its first ever research granting program—it’s baby steps but it’s all working towards a much bigger vision. Through this program, researchers can apply for a start-up grant to initiate new research ideas or projects that will help them obtain larger multi-year grants in the future.
As a member of the Board of Directors with specific expertise in health research and knowledge translation, this is where I am pouring my energy. I am the bridge between research teams and lupus patients because I can speak to both sides. I am determined to help move the commitment to research forward and to see that dedicated researchers translate all that data and science into something real.
We need researchers to focus on what patients really need; like better treatments for pain so it’s easier for me to get out of bed and comfort my baby when she cries in the middle of the night.
I want my daughter, Maliya, to grow up in a world where we have found a way to prevent this illness from occurring—a future in which no one has to live with the punishing symptoms that come with lupus.