Hoping for clear skies amid the tornadoes of hemophilia
Joint bleeding causes chaos, even after the storm has passed
I remember watching “The Wizard of Oz” as a little girl. While the visual effects now appear primitive compared with today’s high-tech productions, the movie scared me when I was a kid. The scene where Dorothy was trapped in her house as the tornado lifted it into the sky seemed very real to me.
Today, movies depict tornadoes and natural disasters in such realistic ways that even adults feel scared. While I’ve never physically been near a tornado, there was a time in my life when I felt like Dorothy as her house swirled and churned in the gray sky.
Raising a child with a bleeding disorder is like being inside a tornado. First, there are moments when you hear the sirens, aka receive warnings that a bleed is churning in the child’s joint. Then the swelling and pain increase, signaling the tornado’s arrival. As a parent doing everything possible to alleviate the pain, the house seems to swirl higher and higher in the air.
Similar to the destruction caused by a tornado, the chaos of a bleed can result in missed days of school or work. It can mean crying in pain when medication doesn’t help. Joint bleeds can put a person in the hospital for days or weeks.
My youngest son, Caeleb, is 17 years old. In his younger years, his hemophilia was reminiscent of Dorothy’s house spinning in the air — except that our house didn’t come back down to earth. Instead, Caeleb’s hospitalizations and inhibitor complications continued to cause chaos in his body and among our family.
For years, I thought the whirlwind would never end. Eventually, Caeleb started infusing a plasma-derived factor product daily, and for the first time in years, he wasn’t bleeding into his joints. The house finally came down, and the stillness was a welcome visitor.
But after years of excessive bleeding into his right knee and ankle, I knew the sustained damage would be a problem. However, I didn’t know when or how issues would arise. I hoped they wouldn’t.
A few years ago, Caeleb began having serious issues with pain in his target joints. I began to understand what other people with hemophilia meant when they described the aftermath of joint bleeding.
Today, watching my son wake up each morning with limited mobility is heartbreaking. He’s missed weeks of school. Many parents in similar situations might have to take their children out of school or begin home-schooling them. Fortunately, Caeleb’s school is working with him as he completes his assignments at home.
Caeleb has an upcoming surgery on his ankle. With injections into his bad knee giving him some relief, I hope that removing the two bone spurs in his ankle gives him more mobility. While this surgery won’t necessarily help his hemophilic arthropathy, it may help him walk longer distances again.
Tornadoes come and go. When they’re actively swirling and destroying everything in their path, all that can be done is wait. When the tornadoes stop, the air is still and the sky is clear; hope surfaces amid the destruction.
I have great hope for my son and his future. Unfortunately, the tornadoes are back, but hopefully for only a short time. I’m looking forward to clear skies with eternal hope.
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.
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