Olivia O's Story
After years of searching for answers, she found the right PNH treatment—regaining stability, strength, and the freedom to do what she loves.
Living with PNH
I wasn't the classic PNH case. I didn't experience the common symptoms that other people had.
My PNH story actually started when I was diagnosed with aplastic anemia in 2011 and didn't respond as well as I should have to my treatment.
My hematologist and I started to dig for answers, in search for something that would work for me.
It was very distressing. My hematologist, who happened to specialize in PNH, decided to test me for it. As it turns out, I did in fact have PNH. This was in 2017.
At that time, there was only one medication available for PNH and it took nearly three months of dealing with red tape before I could start. Up until that point, I was only on steroids to help keep my hemoglobin levels stable.
I didn't have any reason to doubt that my first medication would work for me. But truly, it just didn't.
The plan was to take the steroids together with my medication to start and to slowly taper off the steroids. However, the day that I stopped the steroids, I was in Edmonton for a hip-hop dance competition and I just couldn't perform. I was beyond exhausted. I felt cold. So cold. I couldn't feel my toes, couldn't use the stairs and barely made it through the dance. I was so upset, because dancing is very important to me.
It turns out that my hemoglobin levels had plummeted so low that I needed a transfusion immediately. That's when we were certain that my first treatment was not working for me.
I felt hopeless.
Around this time, my hematologist told me about a clinical trial for a different PNH medication with sites close to me. Although there were some challenges in qualifying for the trial, eventually I was enrolled and got access to the new medication.
I was on my second treatment for five to six years and, for the most part, everything went well. Until it didn't.
At some point, I fell sick and noticed my blood values start to tank again, so my hematologist increased my medication dose. But this didn't help for long. That's when I had to switch, yet again.
Since starting my new treatment, my condition has stabilized and my quality of life has improved. I haven't been getting sick as often and it has made travelling so much easier. Fun fact: I went to Hawaii last year, which was such an awesome experience!
Every chapter of my story has been uniquely challenging. But I will say, this chapter has been one of the better ones so far. Through the years, I've learned to adjust, to listen to my body, and also appreciate where I am. I am grateful for my support system and my ability to do the things that I love – like dancing.
My advice to other people living with PNH is this – lean into your community. There's so much support available, you just have to reach out to them!
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