Turning my secret into my passion: Jeune Syndrome
September 22, 2020
Growing up in Costa Rica meant that I spent a lot of time barefoot, at the pool or the beach. While these spaces are usually relaxing and fun, I felt tremendous social anxiety because I was afraid that people would look at my feet. I have short 4th toes in both of my feet, also known as Brachymetatarsia. My difference is related to my genetic condition, Jeune Syndrome, also known as asphyxiating thoracic dystrophy.
An estimated 1 in 100,000 to 130,000 babies are born with this syndrome. Not only are we rare, but for each one of us our diagnosis is expressed very differently. The majority of children born with Jeune syndrome have severe breathing problems. Some children will grow out of these after age 2, while others may need lifelong ventilator support.
People diagnosed with Jeune may also develop high blood pressure, liver disease, pancreatic cysts, dental abnormalities and retinal disease, leading to night blindness and/or tunnel vision. My condition is so rare, that back in the early 1990s when I was born, most of this information wasn’t available. So it wasn’t until a week before my 30th birthday, that I was getting my first retinal exam done.
Although I am not proud that I waited this long to learn more about my diagnosis, I am aware that it’s better late than never. I know that I waited partly because of how mild my condition is, which kept me away from doctor offices and hospitals for the better part of my childhood. However, I am also painfully aware that I waited so long to learn more about my genetic condition because of the stigma I felt of having a condition that made me different, that made me rare. And this stigma kept me from the truth.
Frustrated with the stigma that I felt, I started playing with the idea of creating garments that empowered women to share their story, as a way to lower stigma. Hence, MIGA Swimwear came to be: the first swimwear line inspired by women’s stories with rare conditions and visible differences like burn scars, disabilities and chronic illnesses. Since the conception of the line, I have worked with over 40 women, all with very different diagnoses, to create swimsuits that are empowering, bold and confidence boosting. In our most recent collection, the Colette tankini set with matching skirt, is inspired by Colette’s rare condition, Sacrococcygeal Teratoma. She wanted to have a suit where she could choose when to disclose and when to conceal her scar. Her swimsuit comes with a canvas bag that tells Colette’s story, as a way to also raise awareness with our customers.
Since creating MIGA, I have stopped concealing my toes. Now the first thing people know about me, is the secret I always feared. I am here to say that if you feel bad for sweeping under the rug your diagnosis, for fear of what it may or may not be, don’t be. Fear is normal and natural but don’t let fear bar you from eventually taking action, because perhaps if you are as lucky as you are rare, learning about your diagnosis might just make you feel whole again.
From September 14 to September 25th, we will be donating 3% of net revenue of all orders placed during that period to Global Genes. Get your MIGA Swim today!
This piece is a guest post contributed by Maria Luisa Mendiola, founder of MIGA Swim.
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