Preparing for college means putting hemophilia in its place

Preparing for change is never easy. For Caeleb, my youngest son, this season of his life is stressful yet exciting. After graduating from high school, he is marching on as a freshman at the University of New Mexico this fall. He’s excited about attending college, but has some anxiety about what the future holds.

Caeleb doesn’t fear the academics. Instead, he worries about managing the long-term complications of hemophilia. My son suffers from chronic pain as a result of numerous spontaneous bleeds, and he’s now showing increasing concern about the possibility of missing too many classes because of the excruciating discomfort that flares up occasionally in his right knee and ankle.

Many times he feels so much distress that he cannot walk on his own and requires a cane or wheelchair. Even with this assistance, the pain is often too great for him to attend class. Even standing up without putting any weight on his right leg can inject so much agony that he becomes immobile. It takes him days, if not weeks, to recover.

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Planning for success

As we talked about Caeleb’s college schedule, I drew on my advocacy experience and recalled solutions to some of Caeleb’s roughest bouts with chronic pain. We know he experiences more complications in the morning; most afternoons, he can move around with a walking device. Granted, he still experiences pain later in the day, but at least he can accomplish tasks. My wife, Cazandra, and I have advised him to keep this tendency in mind while scheduling his college classes and other activities.

We’re also encouraging Caeleb to share information about hemophilia with his professors. Letting those around him know about his medical issues will help to build relationships and understanding. Caz and I remind him that the more people he involves in his life, the better his chances of receiving extra help when an emergency arises.

We reminded him that the worst thing he can do is remain silent. Failure to share only leads to speculation. I told him, “If you don’t talk with your professors and a critical pain attack leaves you absent for several days, an instructor may feel like you didn’t want to attend class and give you a failing grade.”

Communication is vital while maneuvering through the academic world. I told him that, in college, the professor makes all the decisions regarding classroom procedures, late work, and absences.

Fortunately for Caeleb, the University of New Mexico Hospital is right across the street from the school. In an emergency, he can make a short trip to the hospital’s hemophilia treatment center. He already knows the doctors and nurses there, so hopefully his anxiety will remain at a minimum if he experiences any issues with his bleeding disorder.

Cazandra and I told Caeleb that it’s essential to prepare for unexpected events. I constantly remind him to plan for the future, but remember that life happens. Attention to self-care can help him navigate surprises and put hemophilia in its place. I told my son, “Your bleeding disorder doesn’t have to control you if you have strategies in place to manage it.”

I looked at Caeleb, hoping he truly heard what I’d said. I’m praying that self-care will help him keep the horrible effects of his bleeding disorder at bay. With support and patience, Caeleb can fulfill his deepest desires despite hemophilia.

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.