Cystinosis is life changing.
I’ve written multiple posts detailing all the ways in which cystinosis completely threw our lives for a loop and there’s no denying that it leaves its mark on everyone involved. After the initial shock and general craziness of those first early years started to even out, the idea that I might want to commemorate my experience started taking root.
When I was 17 years old, I got my first tattoo. It hurt. A LOT. But instantly I knew I wanted more and I’ve always loved the idea of having tattoos that represent meaningful things, people and/or events in my life. And honestly what could be more transformative than cystinosis? But thinking about ways to visually represent an invisible disease can be tough. Luckily there are many creative people in the cystinosis community and I’d like to share some of their creativity today.
A beautiful way to show your support for cystinosis (or any disease) is through awareness ribbons. The cystinosis community has adopted the green ribbon or sometimes people use the zebra striped ribbon which represents all rare diseases. Here’s a couple of examples that I love.
One of the most prevalent themes in the cystinosis community is hope. There’s just so much of it. Especially with the upcoming stem cell and gene therapy clinical trial which might very well be a cure for cystinosis. So there’s really no better way to recognize our journey with cystinosis then with hope.
Another idea that I absolutely love and debated getting myself is the skeletal formula/structure of cystine. Cystine is the amino acid that people with cystinosis are unable to process. As the cystine builds in their cells it crystallizes, eventually causing cellular death and wreaking havoc in the body. So it’s kind of an important thing when it comes to cystinosis and I’m also a complete sucker for nerdy tattoos.
And I also need to point out how much I love the tattoo Todd’s sister got, the 17p13.2 which is one of the genetic mutations that can cause cytinosis ❤
Creative tattoos are also a huge favourite of mine. A few people in the cystinosis community have taken this approach and I love what they came up with.
It’s a little hard to tell in the picture but Clinton, current president of the Cystinosis Research Network, got his son’s surgical scars tattooed to his body which I think is just the sweetest thing ever! And then next to him Emily added sunglasses to her sugar skull tattoo in recognition of the photo sensitivity that cystinosis can cause and why many people with cystinosis are always wearing sunglasses. Next is Courtney’s and I think her medical alert tattoo is not only really pretty but also a really great idea in lieu of having to wear a medical alert bracelet everyday, and I love the added rose at the top.
So, in the end, I ended up going in the creative direction. I didn’t want to get a tattoo that only recognized cystinosis, mostly because I can now say (6 years later 😉 ) that it’s just one part of our lives and not even the most important. To me, the most important thing is family. I know I’m biased here but Elsie and Linden are the best kids around and the love they’ve added to our lives deserves to be immortalized (for as long as I’m alive anyway).
I got my first cystinosis tattoo about two years ago (the one on the left) and every bit represents a part of them. The leaves and little yellow blossoms are from Linden trees, the pink Orchid is for Elsie because she’s my favourite little flower, and the crystals are for cystinosis. As I mentioned above when cystine accumulates it starts to crystallize, also the reason cystinosis causes photo sensitivity is because crystals can form on the corneas, so yeah, I figured crystals = cystinosis. Phil Kwan at Monkey King Tattoos here in Vancouver took my random ideas and turned them into this beautiful piece of art and literally two minutes after he finished the first one I thought, but now my right arm looks empty 😛 So finally, a few weeks ago I went back and got another to compliment the first and of course there’s more crystals.
So now I can say that I have crystals too.
I’m so unbelievably happy with my tattoos and how they’ve turned out and absolutely love having this visual reminder that even though cystinosis will always be a part of our lives, and it might not always be the easiest, at least it can be beautiful too.
Thank you to everyone that shared their personal supportive tattoos with me and a big, BIG thank you to Phil for creating gorgeous tattoos that I will treasure forever ❤
Elsinosis: Living with Cystinosis 