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Haemophilia is scary!
Thanks to medication, Syrus Walter Ordway is able to live a life without fear. 

Untreated haemophilia means nosebleeds six times a day. Untreated haemophilia means falling down and not being able to walk for a month. Untreated haemophilia means chronic joint damage. Untreated haemophilia means the potential to travel by wheelchair starting at age 20. Untreated haemophilia means having a perpetual fear of every itty, bitty, minuscule thing that happens to you.


In short, untreated haemophilia means a life governed by a condition.

My treatment enables me to live a “normal” life - one not riddled with the constant fear that any misstep can damage me heavily.



I self-administer my medication regularly on a preventative basis twice a week and have done so since from about the age of 9. One time, when I was 12 years old, I missed a dose. “Okay”, I thought, “not a huge deal. I’ll just catch up on it tomorrow”. I then went to an activity night at my middle school. It was a great time - board games, a room to dance, lots of food and drink, and the gym was open to play games. I’ve always been a huge fan of competition, especially sports. As such, it was hard to stay away from the basketball court, but I did so for almost the entire night. Eventually, though, I couldn’t resist the temptation any longer. “Just a short one on one to 5”, I told myself. After the first shot went up, I dove for the ball and landed right on my hip. It hurt a bit but didn’t feel like a huge deal. I stopped playing for the night regardless, though.


The next morning, as I was lying in bed and had finally stopped refusing to get up, I felt a sharp pain in the same hip I had landed on the previous night. I pulled down my blankets to see my hip swollen at least two inches. I was unable to walk at all for the next few days. Even with my medication to help me heal, it took over a month before I could walk properly again.

So, thanks to my medication now (so long as I stay on it), I don’t have to worry about minor things causing me long term discomfort. I can’t imagine how this story could’ve gone if I hadn’t had any medication at all.

If there was one part of this condition I wish I could entirely remove, it would hands down be the fear associated with it. Having haemophilia requires one to be constantly vigilant about every single little thing that they feel at any given time in order to monitor for a bleed. It spawns anxiety, resentment, stress, and fear. I wouldn’t wish it on anyone.

Thanks to medication, I am able to live a life without fear and do whatever I want when I want - be it hike up a mountain or play ultimate frisbee at lunch and dive into the ground to catch a disc. I can have fun with my friends.