Battling Complacency in Hemophilia by Remembering the Past
Every family member has a role.
Parents usually assume the roles of providers and nurturers, making sure their children have a roof over their heads, food to eat, and plenty of love.
Siblings each bring their unique personalities to the home. Some are playful and fun-loving, while others may be more serious. Regardless, their individuality makes the family special.
Even pets have a place in the home, as they seem to throw a party the moment a person enters the room. Their unconditional love and affection bring joy to the mundane.
Yet, we can’t forget chronic illness, which can be another significant presence.
In my family, hemophilia is always present. Over the years that my youngest son, Caeleb, experienced complications from hemophilia and an inhibitor, his bleeding disorder never gave us a moment of peace. Its presence was hard to ignore, like a guest who didn’t get the hint that it was time to leave.
During the difficult times, hemophilia was the main topic of conversation in my home. Each day depended on how hemophilia made its presence known. Even planning a routine day became impossible because of the unpredictability of Caeleb’s condition.
Eventually, hemophilia stopped being the center of attention. Instead of waiting to see how the bleeding disorder would manifest in Caeleb, each day began with great possibilities. A new treatment changed the course of Caeleb’s life, and hemophilia became less of a threat. The condition was now at the bottom of our list of importance.
Hemophilia stays with someone for a lifetime. While great treatments and protocols can allow for normal, daily activities to go as planned, hemophilia still holds importance in the family. Therefore, it should never be forgotten or neglected. It only takes a moment of complacency for a family to return to a life in which managing a bleeding disorder is a full-time job.
Complacency is a threat to the bleeding disorders community. When a new drug or protocol improves an individual’s quality of life, it’s a victory. For many living with hemophilia, current therapies have changed lives for the better. As a result, it’s easy to put memories of a painful past behind us. While I don’t think dwelling on painful memories is healthy, it’s essential to keep those memories close.
A person should have a healthy relationship with their bleeding disorder. I am doing my best as Caeleb’s caregiver to ensure he has a good connection with his condition. Caeleb remembers what can happen if he doesn’t treat or pay attention to his body, so I hope he will continue to treat per his doctor’s orders. I want nothing more than for my son to understand all the ways hemophilia can affect him. The good and the bad are equally important.
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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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