Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories. Today’s spotlight shines on Veronica Stewart, a technical school librarian who lives with Junctional EB.
1. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.
I was diagnosed at birth. I don’t really know that much about the early days other than that I spent three weeks in the hospital. In the 1970s, I’m sure my parents felt very much alone. There was briefly a DebRA chapter in Memphis in the mid-1980s. That was the first place where I met anyone else with EB. It really wasn’t until I had regular access to the internet in the late 1990s that I was able to join some online listservs and have anything resembling regular contact with “my people.”
As for daily skin care, it’s all been very much trial and error. My parents kept it simple, partly because we didn’t know about or have access to advanced care items, and partly because I didn’t seem to need any of them. Now that I know about and have access to things like Mepliex I do use them because they make care easier, but I know I could do without them if I had to.
2. What are some challenges, if any, that you have faced as an individual with EB? How did you learn to overcome them?
EB presents both physical and psychological challenges. The physical limitations brought on by the constant threat and presence of injury, the pain, and the reactions of others to our disfigurement affect our psyche. I suspect that I would be a very different person were it not for EB. I can’t say that I’ve really overcome any of this. I do have an education, a full-time job, and I live on my own, but I also don’t have a husband, children, or many friends. This is only partly due to the judgement of others. I admit that I tire of minimizing the appearance and limitations of EB to make myself more acceptable to others. The fewer people I have, the less I have to put other’s comfort with me over my own needs.
3. What brings you hope when you’re having an especially tough day?
I have a real problem with people who hope for a cure for EB, especially those who teach their children with EB to hope for some miracle that will make them better. I think that sort of false hope just sets us up for a lot of heartache, and we have enough of that. If some injury really hurts today, I just tell myself that it will eventually heal and stop hurting. Even though it will be replaced by new injuries I think that is the only realistic hope that we have.
4. Has living with EB ever impacted any hobbies that you are interested in? If so, how?
EB impacts everything. I can’t select an item of clothing or a food to eat without thinking of how it will affect my skin and tissues. I chose my profession because it guaranteed indoor work. I chose my home because it lacked stairs. I have to limit my off-hours activities so that I can keep my feet and hands well enough to report to work. If anything EB has limited my choice of hobbies, as it has limited everything else.
5. Please share with us your dreams and aspiration, both immediate and/or long-term.
I still aspire to see more of the world, but I’m old enough to admit to myself that age, EB, work, lack of funds, and breast cancer have made that impossible. Now, I aspire to not have cancer return.
6. What message would you like to share with others impacted by EB?
Life is hard, EB makes it much harder.
7. What message would you like to share with those who don't live with EB?
We want neither your pity, nor your prejudice.
Thank you, Veronica, for sharing your story! You can connect with Veronica by sending her a message.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!