Researching my EB diagnosis as a child had long-lasting impacts
I was able to view life from a more positive perspective over time
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Children can be very curious and ask anything that comes into their minds. As a young child in elementary school with recessive dystrophic epidermolysis bullosa (RDEB), I would get curious looks and stares from many students at my school. Some children would ask me questions like, “What happened to your hands?” or “Will I catch it if I touch you?”
This was very tough on me, as I already had anxiety. It was also difficult for me to try to explain epidermolysis bullosa (EB) to another 5-year-old child since I only had a few years of experience living with it. It was entertaining, however, trying to get them to pronounce it.
When I was 12 years old, I began getting asked more complex questions from students, including “Does it affect how long you’ll live?” Before I was asked that question, I had never even thought about whether my condition would affect my life expectancy. That made me want to begin researching EB in more detail in the hope of learning more accurate answers, both for myself and for others who would ask me.
It’s difficult for a child to comprehend the complexities of EB
At that time, I had not yet met anyone else with EB, so I had no one to reach out to with my questions. I began searching the internet for information on my condition. There were only a couple of websites at the time that provided any information on EB.
Unfortunately, being as young as I was, it was very difficult for me to comprehend the complexities of EB, as well as the different subtypes. I scrolled through the website, trying to make sense of the information I was reading. Eventually, I scrolled to a section called “Life Expectancy for Patients with Recessive Dystrophic Epidermolysis Bullosa.”
As a child, I was full of curiosity about my condition, but I couldn’t really comprehend at that time just how much learning something negative could adversely affect my mental or physical well-being as I grew. Looking back, I know that I was not ready to read something of that depth about my life.
In the first few sentences, it described RDEB as being one of the worst subtypes of EB, adding that it got worse with age, and that a person’s life expectancy with RDEB was approximately 35 years, usually due to forms of cancer or complications related to EB.
I was 12 when I read that. I may have been young, but I could do the math.
Learning that I may only have 23 years left, while others had an entire lifetime ahead of them, hit me very hard. As I grew, my way of thinking began to change. The number 35 caused me to give up on certain dreams I had, such as getting married, having a child, or working toward a career path.
I have passed my expiration date
Eventually, I began meeting others with EB, and I was able to finally ask some questions to people who were older than me and dealing with similar issues. Connecting with other teenagers with EB really helped me not feel so alone. However, as I made good friends with EB, I also worried about them getting older.
I was in my early 20s when I lost my first friend to EB. He was a stand-up comedian who wanted to collaborate with me, as I am a pianist and singer. Unfortunately, we never got to perform together before he passed. Losing friends to the same condition that I was born with has been hard to cope with. Many others have gained their wings since then, including my wonderful fiancée.
The mental toll that all of this took on me over the years really affected how I perceived my life. Anxiety and depression became stronger by the time I reached age 30. My family and friends wanted me to celebrate (and we did), but inside I was just worrying about the number 35.
Even though this took a huge toll on my mental health for a while, it also made me view life more positively over time. I appreciate each day more than I used to. I am grateful for everything and everyone in my life, from my family and friends to the educational journey I have been on.
I am now 38 years old. I am in my third year of college, studying to obtain my diploma in social service work. I have spoken with many people with different subtypes of EB and of different ages. This has helped me cope with the realities of living with EB.
As technology improves, so do the chances of improving the overall quality of life for those of us with the condition. Now, I like to tell others that I passed my expiration date and am aging like a fine wine!
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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