I Still Worry About My Son with Hemophilia, but He’s an Adult Now

I Still Worry About My Son with Hemophilia, but He’s an Adult Now

Cazanadra Hemophilia

My eldest son, Julian, is 22. He is studying music at college. It’s his passion, and as I have a music education degree and my husband has a music degree, his course choice did not come as a surprise. With our recent move, Julian changed schools, and his university is a 30-minute drive, which allows him to live at home. But there is one problem.

I love that my son is living at home, but the drive to school is rural. His route has cows, cows, horses, and more cows, and sometimes cellphone coverage is spotty. Will his car break down? Will he have a blowout? Will he be involved in an accident on that two-lane highway? The one thing I ask of him is that he wear his MedicAlert.

One thing. Only one thing that I truly need him to do. I don’t even ask if he has infused lately. I had to let go of that one several years ago, knowing that when he feels a bleed coming on, he immediately treats. He seems to be infusing fairly regularly, so I cannot complain, but when he is late coming home I start to think: “Did he infuse today? If he had a wreck, he has some factor on board. How long until they know he has hemophilia?”

It’s a craziness that takes over my mind from time to time probably because I know that many young adults believe they are invincible. I know I felt that way when I was a young woman, but I didn’t have a medical condition that needed special attention. I thought nothing was impossible and I was going to take the world by storm. Would I have acted any differently if I had a bleeding disorder when I was 22?

Of course, I like to think that I would have been safer in my adventures as a young woman, but I’m not so sure. Julian is at a time in his life when he is learning and experiencing the world in new ways. He is figuring out who he is and what he wants to do with his life. I continue to worry, as I remind myself of the wonder of college life. Julian is one of many with hemophilia who has never experienced debilitating bleeds. Joint problems are not an issue for him. He is in great health, and with great health comes complacency.

The treatments available today have given many of those in the bleeding disorder community freedom that those in earlier years did not have. It can be easy to take good health for granted, but when you have a bleeding disorder, one serious accident can change your life. It’s not something to be taken lightly.

Be proactive. Impress upon your young adult the importance of infusing as prescribed. Encourage them to tell close friends about their condition. When they leave the nest, we must trust that they have everything they need to take care and be safe.

And wearing a MedicAlert may be the only way to keep them safe when no one else is around.


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.

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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (12) in Farwell, Texas. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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