In my home these days, hemophilia is like a family member who stops by for a fleeting visit — just long enough to say hello and give a quick hug, but not long enough for a cup of coffee.
I hadn’t dared to dream that this situation would become a reality for my family. It’s easy now to put hemophilia out of my mind until the weekly dose of Hemlibra (emicizumab-KXWH) on Sunday nights, unless something reminds me of the difficult years.
Recently, I read a Facebook post from a mom who shared her son’s struggles with spontaneous bleeds. Spontaneous — that’s a scary word in the bleeding disorder world. Her son gets nose, mouth, and joint bleeds. He even has a history of brain bleeds. He does not respond well to factor. She attached graphic photos that contained quite a bit of blood. Her heartbreaking post took me back to the summer when my son Julian tore his frenulum and the wound would not stop bleeding. Washcloths, his clothes, and my clothes were saturated with blood. We tried popsicles and Amicar (aminocaproic acid), but nothing helped until he was finally diagnosed with an inhibitor.
This mom’s account reminded me of the nightmare of accessing my mighty warrior Caeleb’s port: Finding a vein took hours, buckets of tears, and screams of sheer terror. I’d like to forget those moments. Recalling those experiences does not help my family or me. However, I must remember something important.
If those of us who have survived the “worst of the worst” with a bleeding disorder forget about our challenging times, how can we help others? Our stories have tremendous power to show people the resilience of those in the rare disease and chronic illness communities. Of course, it is a wonderful thing to be in a place medically where your disorder is well-controlled, but maintaining a presence either online or at chapter events is crucial. By sharing our stories, we can be the source of strength that someone else may need in the present.
Here we are.
My perspective on hemophilia has changed significantly over the past few years. I am grateful that both of my sons are thriving, and hemophilia is now merely a small aspect of their lives. Forgetting about the past is much easier these days, but I need to ensure that those memories do not fade.
I have been in the thick of the worst that hemophilia can bring, and I am relieved to be on the “other side” of the fight — at least for now. For those of you in the heat of the battle with a bleeding disorder, I understand your pain. You are not alone.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.