My mom discovered blisters on my ear and hand when I was around two weeks old. She took me to the doctor, and that’s when we found out that I have EB. That’s when the journey began.
Lots of blisters, raw skin, and bandages—my whole life. I do have some days when my skin is completely free of sores or blisters. Not many, because I don’t stay still long enough to avoid hurting myself somehow, but there are a few here and there. I don’t know what type of EB I have.
I have known and loved people who had the Dystrophic type, and mine is not nearly as severe as theirs was. I was married to a man who had that type, and he passed away after nine years of marriage. He had a brother and a sister who also had the Dystrophic type. All three passed away in their 30s, and I really miss them. My husband and I had a son together, and I’m very thankful that he does not have EB.
Although there have been many physically painful days and nights because of EB—and even more emotionally painful days watching my husband and his siblings suffer—I am not the least bit bitter about EB. I know I have it for a reason, and if I can help someone else because of my journey, that’s exactly what I want to do. My husband and his siblings had amazing attitudes about it, so I keep that in mind. After seeing firsthand what they went through, I know I have no room to complain. Plus, I love life, and I do whatever I can in spite of EB.
I love to write! Sometimes, when I have blisters on my fingers, it’s a real challenge—but I somehow find a way and write anyway.
debra of America has helped me with bandage supplies, and I had the privilege of attending one of their Care Conferences one year. I loved it! Going to the conference reminded me all over again how blessed I am. My husband and his siblings passed away between 1986 and 1990, and I had not seen another person with EB in many years. When I got to the conference and saw so many people with EB, I was overwhelmed with tears. All the memories of taking care of them came flooding back. And, as I’ve already said, I realize that my case could be so much worse.
I learned a lot at the conference, but more than anything, I came away realizing how blessed I am—and how much responsibility I feel to pray for people with EB all over the world. I also realized at the conference that I am not alone in this. No one else in my family has EB, and I’ve often found this to be a lonely journey, like no one else really understands. But I met so many people there who do understand exactly the struggles I face.
debra of America is proud to have supported Penny through our Wound Care Distribution Program. Our Wound Care Distribution Program sends critical wound care supplies to thousands of individuals and families nationwide at zero cost to them. This essential program ensures that those with EB have access to the supplies they need to manage their condition, even when insurance falls short.
Join the fight against EB. Your tax-deductible donation ensures that no family faces the challenges of EB alone.
