Lauren Yung, Markham, Ontario, Canada
Hi, I’m Lauren. I’m 14 years old. I live in Markham Ontario with my 2 sisters, Isabelle and Maddie, and my parents, May and Chris. I was born January 2008 and was diagnosed four months later with Glanzmann Thrombasthenia (GT). GT is a rare bleeding disorder which affects my platelet function. Being the youngest of 3, my mom immediately knew something was not right with my health. She took me to the pediatrician each time I had a new discoloration to my legs, ankles and the soles of my feet. She questioned my health and was passionate to find out what was wrong. She was afraid I had cancer. It turned out the discolorations were bruising from having my legs held during diaper changes. I still bruise easily and I suffer from a lot of nosebleeds. Nosebleeds have been the main reasons for my ER trips to SickKids.
When I get nosebleeds, more often than not, my mom has to pack it. Especially when it’s a fast bleed and lasts for over an hour. She was taught by ENT how to pack my nose and one day I will also learn how to do it myself. I am also looking forward to learn how to self infuse with Factor VIIa this summer at camp.
Camp Wanakita has been a fantastic opportunity for me. I have been going since I was 8 years old. It has given me the freedom to do almost anything I want. At camp, I feel relaxed and happy knowing that my cabin mates, counsellors and staff all understand I just want to have fun and be normal. No one judges me nor makes me feel self conscious that I have GT.
GT has affected my life because I am limited to what I am allowed to do compared to my sisters and friends. My parents were told by the Doctors when I was younger that it was highly recommended I do NOT play contact sports but rather take up sports that aren’t as dangerous for me. I wanted to try the same sports my sisters had the opportunity to play without a second thought such as soccer, gymnastics, baseball, basketball and hockey. Instead, to stay active, I was signed up for dance, swimming, tennis, and a basic level of skating and taekwondo. It’s not fair even though I understand why. I wish I didn’t have to always think about the consequences for the sports I want to play.
A few years ago, my parents and I discussed about the possibility of me trying snowboarding. We talked about the safety and consequences of this activity. Knowing the risks involved, I really wanted to try it so I had my first snowboarding experience during March break 2018. My dad signed me and my sisters up for lessons. We loved it so much and I was happy to have tried something together with my sisters. I have gone a total of 3 times since then and hope to be able to continue going every year.
In school, I have to sit out on games/ matches during gym and only participate during drills just so the teacher can test my skills. It sucks.
When I was around 8 years old, I was bullied at school. Several kids made me feel ashamed and sad because I couldn’t do certain activities. Having to leave school because of a nosebleed and subsequently having it packed only made things worse with their bullying when I went back to school. One kid told me the packing in my nostril creeped them out.
I saw a psychologist for a few sessions that school year because of the bullying. My mom was concerned and wanted to be sure I was coping adequately because of the bad comments I got. As it turns out, the psychologist didn’t seem to feel there was anything to be concerned about because I understood words couldn’t hurt me. The following school year, in grade 4, my mom helped me put together an information session where I presented it to my entire school. I did a couple more presentations the next 2 years in my classroom. My mom says sometimes people behave the way they do because they don’t understand and are sometimes scared and we need to educate them.
Aside from GT, I also have a peanut allergy, severe seasonal allergies and eczema. GT and eczema are a horrible combo. It’s unfortunate when I have a flare up because it takes a long time for my bleeds to stop and it means I can’t do much but hold down the spots. I take that opportunity to do something I love during those times, drawing. I bring my sketch book with me almost everywhere I go.
The past 2 years, living during a pandemic hasn’t been all bad. It has given me the opportunity to get my eczema under control. I also think the masks have helped to keep my nose moist with my breath and if my nose was packed, no one could see it. It helps to keep some allergens out too.
It’s been challenging not being able to hang out with my friends outside of school because of COVID however I have hope that things will get better and we can get back to somewhat of a normal life.