Living with EB, I’ve learned to adapt and prepare for tough days
Experience, critical thinking, and planning help me navigate EB complications
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In the 38 years that I’ve been living with recessive dystrophic epidermolysis bullosa (EB), I have learned that those of us with the condition, as well as those who care for us, must adapt over time to the extra preparation the disease requires.
When I was a child, my mother and I had to consider many factors as we tried to balance living and the daily maintenance that comes with EB.
One factor was keeping up with daily dressing changes. I constantly had numerous open wounds, blisters, and infections on my arms and legs. I had to lance any blisters with a surgical blade, apply pads with topical antibiotic ointment to each sore, and then wrap my hands, arms, legs, and feet in bandages, all before my bus arrived to take me to elementary school each morning.
During the day, some sores would drain and begin to show through the dressings. I had to prepare for these moments by wearing long-sleeve shirts or sweaters. I also had an emergency bag of my dressings that I left at school in case I needed to change them during the school day.
Another big factor is my constant throat problems. I have always had strictures in my esophagus, and if I don’t chew my food well enough, I risk tearing my esophagus. This results in swelling and soreness for about a week.
I was absent from elementary school frequently due to my throat problems. As a child, my pain tolerance was not as high as that of an adult.
When I had a sore throat, I followed a certain routine. My throat would be in the worst condition each morning when I woke up because the scar tissue had time to settle while I was asleep. Due to this, I’d be unable to swallow my saliva for the first half of my day. I had to spit into a bucket and slowly try to force water down my throat to move the scar tissue aside, which was painful.
Once I could partially swallow some water, I would usually chew some mint gum, as the mint eased the swelling in my throat and helped me swallow more easily. It would take until dinnertime for me to be able to attempt swallowing soft food. At night, my throat would function at its best, so I would try to eat and drink the most at that time. The next morning, I would start the cycle again until my throat healed.
I still deal with these problems frequently as an adult. My pain tolerance, however, has increased significantly, allowing me to deal with painful situations more quickly and effectively.
My friends and I enjoy attending a few concerts each year. However, I never know how healthy I’ll be or how much pain I’ll be in on the day of the event. If I feel like I won’t be able to attend the concert, I let my friends know as soon as possible so they can invite someone else to join.
EB can make some days more difficult than others. Over time, we learn how to adapt and prepare for these tough times through experience, critical thinking, and planning.
Note: Epidermolysis Bullosa News 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 other 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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