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 Annie Keys Kendrick, a Project Specialist for Greensboro AHEC from North Carolina who lives with EB Simplex. She is also mom to Brooks, an 18-month-old boy who also lives with EBS.
1. Please tell us a bit about what you do for work.
I am a Project Specialist for Greensboro AHEC, which is part of the federally-funded Area Health Education Centers Program to provide and support educational activities and services with a focus on primary care in rural communities and those with less access to resources. NC AHEC’s mission is to recruit, train, and retain the workforce needed to create a healthier North Carolina.
I am also an active member of my church and Volunteer Coordinator for the Guilford College Bryan Series.
2. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis?
The second I was born, physicians knew something was wrong. I was missing large areas of skin, mostly on my extremities. I was immediately taken to the NICU and placed in isolation. It was not until that evening that one of the physicians remembered seeing a child with Epidermolysis Bullosa during his residency and suggested that is what it could be. In 1980, there was little known about the skin disorder, so the confirmed diagnosis of EB Simplex took several weeks. This was a total surprise as there was no family history. Over the next few years, we met with multiple physicians. I had several biopsies that all confirmed EB Simplex, but because of unique characteristics the specific subtype was always in question. Care during my childhood was a lot of trial and error. I was fortunate that my mother was a nurse and we were able to have access to various types of dressings.
My childhood was fairly normal with minor modifications. After high school, I went with a student traveling group to Australia and New Zealand for two weeks. I went to college and was able to experience all aspects of that life. I had no reason to seek more definitive answers until I got married in 2016. I decided to re-visit genetic testing which again confirmed simplex, but also revealed the rare variant KLHL24 gene mutation. This helped explain a lot of my unique scarring and other different characteristics. Fast forward to 2019 when I was 3 months pregnant and was told this gene showed an increased incidence of cardiomyopathy. I was asymptomatic and assumed any tests would come back negative. However, everything changed when it was confirmed that I did in fact have moderate cardiomyopathy. I immediately started seeing a cardiologist and having routine tests. During this time, it was also confirmed though an amniocentesis that my baby shared my gene type and would be born with EB. Much planning went into the delivery both for my care and his. Brooks was born at 38 weeks and indeed had EB along with Aplasia Cutis Congenita, completely missing skin from the knees down
Having a definite diagnosis for us both has changed my life for the better. There is no question having him literally saved my life as I was unaware that I had any cardiac complications. We continue to learn more about our specific disease variant, we are monitored closely, and we are just so thankful for all the research being done in the EB community and beyond.
3. What are some challenges, if any, that you’ve faced as an individual with EB? How do you learn to overcome them?
I have always been aware that there were certain activities I could not participate in and shoes that would rub blisters on my feet. I have also learned that’s OK. I used to get upset when it would take a lot of care, soaking, and time to heal from large wounds. Eventually, I learned to enjoy that time as “me time” while watching my favorite shows on TV. Cute shoes are my biggest adversary, but that has changed quite a bit over the years. There isn’t much I can’t do, and I always travel prepared for the unknown.
4. Your sweet 18-month-old son also has EB. In what ways, if any, has your EB impacted your role as a mom?
Brooks is the joy of my life and I can’t imagine not being his mom. We obviously have a special bond that is unique to us. I can relate to everything he feels from that sting of water touching a fresh wound, to the annoyance of every blister and burdensome bandages that are necessary for our protection and healing. I hope my life experiences help me to be the best mom that I can be to him.
5. What brings you hope/joy when you’re having an especially tough day?
Sometimes when I think about my cardiac implications, I get scared and depressed, but then I think of how fortunate I am to have excellent physicians and effective medications. This has allowed me to lead a normal life which is needed to keep up with an active toddler. I have a great support system with a wonderful husband, family, and friends. I am very close with my brother and two of my cousins. We text daily, and I can always count on them to keep me in check when I start to complain or feel sorry for myself. I also love all the EB Facebook groups. These groups keep me grounded by letting me know that there are others dealing with the same obstacles I am, if not more so.
6. You’re an amazing advocate for the EB Community. Just a few months ago, you obtained an official EB Awareness Week Proclamation in North Carolina – so awesome! What motivates you to be active in the EB Community?
My mother is my motivation. Both the proclamations read at our local and state level were due to her persistence. She is our number 1 advocate. I also receive encouragement from the response of others when I have shared information about EB on social media as I did this year during EB Awareness Week. You never know who your story will connect with and what could happen because of that.
7. What are your hobbies? Does your EB present any challenges in any of these?
I enjoy traveling, reading, volunteering for a local lecture series, tailgating at Marshall football games, live concerts, white water rafting with friends on the New River in my home state of WV (always leave with blisters, but well worth it), being active in my community and most of all taking daily walks around the neighborhood with my husband, son and dog Norm. I’ve mentioned shoes posing the greatest difficulty, so with any activity I need to be mindful. That said, I have an expensive shoe habit as good shoes come with a higher cost.
8. What message would you like to share with others impacted by EB?
Always advocate for yourself and never be afraid to tell your story. Having EB is nothing I have ever been embarrassed or ashamed of, but having to explain it can be exhausting. I wish I was as vocal about my disease when I was growing up as I am now. Rather than correct someone when they would tell me that it looked like I had bad eczema, I would sometimes just go along with them. My hope is that my son will benefit from my mistakes and be a much stronger advocate for himself.
9. What message would you like to share with those who don’t live with EB?
My husband is good to remind me that everyone has something…his is allergies and mine is EB. When we found out that our son would have EB, my husband maintained that if that’s the worst thing we are dealing with than we were pretty lucky. I wish everyone had that mindset and realized that no one is immune to health struggles or ailments.
10. What are your favorite features on EB Connect and why?
Until recently, I had only ever known one other person with EB. If social media is good for anything, it’s in that letting you know that you are not alone in what you are going through. I have connected with and met so many people over the past year with EB that I otherwise would have never known. I have also learned about so many cool new products for Brooks and myself. For all of this, I am so grateful. I absolutely believe there is hope on the horizon and that there will be a cure.
Thank you, Annie, for sharing your story! You can connect with Annie by sending her a message.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!