Staying on top of their prophylaxis shows me my sons are responsible

Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

The dog days of summer can lull you into a false sense of security. There’s not much going on, everything seems peaceful and calm, and it’s easy to believe that that’s how things will stay.

But living with a chronic illness teaches you otherwise. My sons, Julian and Caeleb, both have severe factor VIII deficiency, better known as hemophilia A, and there have been times when their bleeding disorder took over their lives, such as during a spontaneous internal bleeding episode, and they had to focus on their medical treatment.

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The importance of preventive medicine

But managing a bleed is one thing; getting ahead of their condition to prevent bleeds is something else entirely. I’m happy to report that both of my sons have shown that they are capable of stepping up on that front, too.

Prophylactic treatment is a big part of my sons’ medical care, and I’m so proud and grateful that both of them have taken the reins and shown that they can be responsible for their own well-being. They both take Hemlibra (emicizumab-KXWH) to help prevent bleeds.

Julian, 30, is currently on a national tour of an off-Broadway show. He knows that to tour, he must call his pharmacy to let them know the address to ship his Hemlibra. If he ever misses a dose, he contacts his healthcare team promptly to adjust his schedule. He takes his health seriously, and so far, he has not missed a dose while traveling the country.

Caeleb, 20, endured numerous bleeding episodes and spent a lot of time in the hospital as a child. The damage to his joints proved costly, and he now has little, if any, cartilage in his right knee and ankle.

Caeleb also understands the importance of maintaining a consistent prophylactic regimen and, as a result, has not had a joint bleed in many years. Caeleb still deals with the aftermath of so many bleeds and remains under the care of an orthopedic surgeon to help manage his chronic pain.

My sons know they may not be able to prevent every complication. Despite careful attention to treatment, breakthrough bleeds can still occur. When this happens, they know how to quickly manage the bleeding.

But staying on top of their hemophilia by regularly administering Hemlibra shows me that they take their condition seriously. They recognize the importance of preventive medicine in preventing problems, so they can get on with their lives and live the way they want.

May they always remember to manage the difficult times and hold fast to the good times.

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 consult your physician or another qualified healthcare 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.