Advocacy Needs to Continue, Even During Easy Times

We find ourselves in a delightful spot regarding hemophilia.

My youngest boy’s last internal bleeding episode occurred nearly eight years ago. Using prophylactic treatment, we’re managing his bleeding disorder well. My older son, who struggled with breakthrough bleeding episodes despite using a recombinant factor VIII product, now finds a happy balance between addressing his personal and medical needs.

Thanks to Hemlibra (emicizumab-kxwh), coping with my boys’ medical issues is easier than ever. Gone are the days when three weekly intravenous infusions were the norm in our house. Now my sons do a subcutaneous injection into their thighs once every other week. As a result, both of my stinky boys appear healthy, and breakthrough bleeds no longer rear their ugly head. The boys are experiencing a level of normalcy that was unheard of for people with hemophilia only a few years ago.

So what are we to do with our extra time, given the progress of hemophilia treatment?

The answer is that we can’t forget our past, but we must also keep our eyes open to the future. More treatment developments are possible. I’ve heard a simple nose spray that helps prevent joint and muscle bleeds is in the works. What was a pipe dream 10 years ago is now our reality.

Advocacy and education for the community

We must also remember to take care of our community. Advocacy may come easier when things are difficult because we stand to benefit from the changes that we’re seeking. That becomes our focus. But we must remember to continue to lobby for the benefit of the entire bleeding disorders community.

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By continuing to participate in advocacy, we offer hope to those who have been newly diagnosed and those who continue to struggle with the effects of their disease. After working so hard to seek out what is best for my boys, I can now work toward the betterment of many children’s lives.

And we must continue to educate others about bleeding disorders. If we want people to stand up for what is right in the treatment of hemophilia, we must teach our sons and daughters how to share their needs with the people they interact with. Understanding comes with knowledge.

I hope to instill in my sons that even when things are better for us, standing up for others is still important. I am very grateful for the MacDonald boys’ season of calm waters. But I don’t want them to get complacent. Our roles as advocates remain as crucial as they were during difficult times. Many people depend on and can benefit from our advocacy and efforts to help others better understand this disease.

Our work is far from over as we look beyond our personal needs and into our community.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.