"You're A Rare One"
Before reading, please feel free to read my first blog post about Morphea and Scleroderma if you have never heard of this disease before! You can find it here.
Since posting my first blog post about my auto immune disease Morphea and from posting self-portraits on instagram, I’ve had a a handful of women and young girls reach out to me to share their own experience with this disease. Since Morphea is such a rare disease it’s quite uncommon for a doctor to recognize it, let alone ever meet someone in passing who has Morphea or knows what Morphea is. This makes it very easy to feel like you’re the only one in the whole world that has this disease.
Before branching out of my comfort zone and sharing my experience online I had never met anyone with Morphea or Scleroderma, and I have had this disease since my early childhood. Even with going to Sick Kids hospital in Toronto, I had never crossed paths with another patient who had Morphea. Reflecting back, I realize how helpless and self-conscious I was as a child. I felt like I had no one to relate to and that no one truly understood the personal issues that come with growing up with Morphea.
After sharing my experience and photo series online, I came across the Scleroderma Society of Ontario. This organization puts together fundraiser events every year to benefit the research of finding a treatment or cure for this complex disease. I was also able to meet up with two lovely ladies who both have facial morphea like myself, one who was about my age, and a young girl visiting Canada from the states, whose sweet mother contacted me after posting my first blog post. (Shout out to my old doctors at Sick Kids for sharing my original blog post with your colleagues!)
I just want to take the time to say to all of those who have shared their stories and experiences with me, that I am so thankful that you contacted me. It’s because of you that I want to continue to write about Morphea, and continue to create projects showcasing this unique disease. We have to remember that we are truly unique individuals who share this disease, and that the disease does NOT define who we are. We are so much more than a percentage, more than a patient, we are more than the ignorant comments about the appearance of our skin. We are friends, family, children, mothers and fathers. You might be athletic, or funny, or creative, or independent. You might love to read books, or you might love to cook. Whatever you may be, just remember that you’re a rare one, and not just because of you’re disease.