By Sydney Kodatsky | Wednesday, December 16, 2020 - 2:59pm
Congratulation to Mina for lending her story to help launch Patient Voice. Patient Voice is a social media platform (Instagram, Facebook, YouTube) intended for Canadian patients, their caregivers, as well as the general public. Every week they share a short story, as well as educational information and/or helpful statistics. It is their hope, overall, that Patient Voice will eventually play a significant role in creating a savvier, better-informed Canadian patient community. They also hope to increase conversation around early diagnosis, access issues, and innovation, while decreasing stigma around numerous disease areas through increased visibility. Here is Mina's vignette:
“I was 31 years old, with two young children, and I had recently been laid off. It was already a very stressful time in my life, when I began to experience an overwhelming fatigue that just wouldn't go away. When red spots also began to appear on my arm, I was referred for blood tests and found myself admitted to intensive care. My platelet count had dropped to nearly zero.
As I lay in the ICU for weeks, unsure if I was going to survive, I found myself more worried about my family, especially my children, than I was about myself. I consider myself a very emotionally strong person, but there were times that I just broke down in tears hoping my children would be okay. I was very fortunate to not only have my husband there for support, but also both sets of grandparents. Throughout my experience with aTTP, family has been my rock.
In the decades since, I've had lengthy periods of remission and also several relapses. Thankfully, understanding of the disease has also grown considerably. Today, my children are both adults with successful careers. And, in recent years, it has been them worrying about me more than me worrying about them. It's a strange reversal to get used to, but it drives home how vital family support is for those living with a rare disease.
The disease remains an ongoing challenge, but I feel blessed that I am still here, that I am able to enjoy my life on my own terms, and that I have the opportunity to share in my children's lives as they begin families of their own.”
As I lay in the ICU for weeks, unsure if I was going to survive, I found myself more worried about my family, especially my children, than I was about myself. I consider myself a very emotionally strong person, but there were times that I just broke down in tears hoping my children would be okay. I was very fortunate to not only have my husband there for support, but also both sets of grandparents. Throughout my experience with aTTP, family has been my rock.
In the decades since, I've had lengthy periods of remission and also several relapses. Thankfully, understanding of the disease has also grown considerably. Today, my children are both adults with successful careers. And, in recent years, it has been them worrying about me more than me worrying about them. It's a strange reversal to get used to, but it drives home how vital family support is for those living with a rare disease.
The disease remains an ongoing challenge, but I feel blessed that I am still here, that I am able to enjoy my life on my own terms, and that I have the opportunity to share in my children's lives as they begin families of their own.”