A few weeks ago I received a friendly email from Isa-Bella Leclair, a young Canadian woman who had recently stumbled across the blog. We got to talking and, as she shared her story with me, I was moved: despite the severity of her swelling and her compounded health issues, she maintains an incredibly inspiring outlook and infectiously positive attitude on life.
Stories like Isa-Bella’s always have a deep effect on me because I have a tendency to let my lymphedema get me down sometimes, and the freedom in which Isa-Bella speaks and lives is something I have always wanted but didn’t think was wholly possible. After talking to her, though, I see that it is—and not just for me, but for all of us, any of us, who live with chronic health issues or diseases.
Looking at Isa-Bella’s photos, I don’t see someone who allows her medical condition to dictate her life. In fact, on first glance, the first thing I notice about her is not her leg but her glowing smile, and I see a person who is happy and full of love for herself. I’m sure she’s got her bad days, as we all do, but her personal commitment to living with confidence and using her lymphedema as a means of opening a meaningful dialogue seem to triumph. I love it, and am so grateful to her for sharing her story with all of us!
Here is Isa-Bella’s story, in her own words. I hope you’re as inspired by her beautiful take on living with a chronic medical condition as I am!
A doctor has never said to me that I have lymphedema—they’ve always told me that I have Parkes Weber Syndrome. In fact, lymphedema is a side effect of having PWS and, because it is a congenital disease, I was born and have lived with primary lymphedema for nineteen years. PWS is an extremely rare disease that consists of having multiple abnormal blood vessels in a member of your body (for me my right leg) which are also called arteriovenous malformations. This causes a huge red stain on my leg called a “port-wine stain,” and the lymphatic system damage creates swelling. The excess of blood also causes congenital heart failure. I’ve had several infections because the lymph has a tendency of leaking from my toes and, as you may know, bacteria love lymph. But my team of doctors and I have finally cleared lymphatic drainage massage as being okay for my heart: I am currently half-way through my treatments and already seeing results!
It’s always been difficult being active because of my heart problems (I am forbidden from doing any cardio), but I’ve found some alternatives that don’t push my limits (that’s the most important part—knowing your limits). When I was in 3rd grade, I discovered what is now my favorite sport: snowboarding! Eating healthy, drinking water and getting enough rest is always good also to keep feeling good.
Because I was born with the malformation, I had no other choice but to get used to people staring and asking me questions. I always told myself from a young age that curiosity is normal and the only thing that can help it is awareness, so I learned about what I had and told the other kids about it even before they had time to ask. My condition doesn’t define me and no way I will let it stop me from wearing a cute swimsuit or a cute dress. I don’t fit in skinny jeans or fancy shoes so I have to find alternatives, but I always end up still feeling good about my body. For me, confidence is the most important part, because when people see someone confident in their body—even with a handicap—they don’t have pity but instead admiration, and that’s when you have the chance to be a good influence and change the standards of beauty.
—Isa-Bella Leclair, June 2015
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