Rare Disease Day

February 29th is Rare Disease Day

I am Melissa Sharpe, an intern here at Moving Forward Family Services. I thought I would share a little about myself in light of Rare Disease Day, February 29th. Rare diseases are classified as diseases that affect fewer than 1 in 2000 people.

In 2023, at 39 years old, I was diagnosed with Birdshot Chorioretinopathy, a chronic, bilateral, posterior uveitis that affects less than 1 in 100,000 people. In short, I have a rare eye disease that causes inflammation of the retina in both eyes. It was discovered through a routine eye exam and confirmed through genetic testing. Birdshot is strongly associated with the HLA-A29 gene. Although I had few visual disturbances at the time, the weight of the diagnosis was immense.

I wanted to read everything I could about the disease. With that came the realization that I would likely lose my vision, either entirely or partially at some point in my life. This instantly sent me into a spiral of anxiety. These negative thought patterns became overwhelming and encompassing. I could not stop thinking about the milestones I may not physically see in my kids' lives. This catastrophic thinking led me to destructive thoughts such as, "If I lost my vision in ten years, I wouldn’t see my daughter graduate high school,” for example.

Fortunately, I have a therapist who encouraged me to find others who have this disease and connect with them. As someone who is fiercely independent and private, the idea of joining a group was almost as terrifying as going blind! I didn’t know the power of having a circle of people who have shared the same lived experiences. I found a Facebook group for people in North America with this disease. That was my starting point. Through this group, I found Birdshot Uveitis Society of North America (BUSNA), a nonprofit organization for people with Birdshot. One of the board members listed on the website is originally from Newfoundland, and so am I! That was my springboard to make a connection. I reached out to her, and then she put me in touch with some other Canadians. Before I knew it, I had a handful of new friends who knew exactly what I was going through.

One of the biggest things I had to learn this past year was to trust. Brené Brown defines trust as “choosing to risk making something you value vulnerable to another person’s actions.” It’s a big leap, to take something as valuable as your vision and leave it in the hands of someone else. I am learning to trust that my doctors will help me preserve my vision for as long as possible. And I am becoming someone who appreciates having a group to lean on as I face uncertainties.

As we recognize Rare Disease Day on February 29th, may we also recognize the personal growth and resilience one experiences when working through challenges.

Moving Forward Family Services appreciates this contribution by: Melissa Sharpe


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