Reine’s story

Behçet’s disease

Patient Voice spoke with Reine Hodroj about the role that patient organizations can play in helping to combat the isolation of living with a rare inflammatory condition like Behçet’s.

Mississauga, ON

I was 16 years old, living with my parents in Dubai, when I started getting mouth ulcers. At first I didn’t think much of it but, by the time I moved to Lebanon for university, the ulcers had become a constant source of misery. They were getting bigger, more frequent, and bringing with them fever, nausea, and night chills.

When the pain got too bad, I’d go to the ER, where the doctors always told me it was just a virus, or a sinus infection, or stress causing them. Relax and wait. They’ll go away on their own.

Of course, they didn’t go away. Instead, my symptoms grew to include genital ulcers, sores on my eyes, and severe joint pain. It wasn’t until I started doing research on my own that I realized I was probably dealing with an inflammatory immune disease. I needed to see a rheumatologist. I did, and that’s how I finally got the diagnosis of Behcet’s disease and was able to begin treatment.

When I first arrived in Canada to pursue grad school at York University, I was worried about how I was going to manage my Behcet’s. I needed monthly injections, and I wasn’t able to do them myself or bring any with me. The same week I landed in Toronto, I went to a walk-in clinic, anxious that the process of getting referrals was going to take forever and all my symptoms were going to come back in full force.

But, for me, Canada has been a great place to be a patient. I got my injection on time that first month, and I was introduced to so many supportive organizations that were happy to help me. There wasn’t even 5% of this support network in Lebanon or Dubai. Seeing how important this community was, more than anything else, made me want to help out as well.

I started volunteering with the Canadian Autoinflammatory Network as well as Cassie + Friends. I started mentoring and I also discovered that my skills as a designer were a great resource to these organizations.

It’s funny, because art was always therapy for me. Painting, drawing, colouring — these were things I used to take my mind off the pain and the misery when my symptoms were at their worst. I never thought I’d be using these skills to raise awareness of the very disease that caused them.”

Reine created Being Rare to increase awareness of the challenges associated with living with rare autoinflammatory immune diseases like Behçet’s. She shares blog entries and stories of other Canadians with similar lived experiences. Click here to learn more.