This fall it will be 30 years since I went off to college, where I gained regular access to the internet. I spent as much time as I could researching EB and connecting with others. I have learned so much about EB in those 30 years- from researching, reading, observing, personal experience, and connecting with others.
In honor of the past 30 years, here are my top 30 things I have learned about EB that I feel are most important. Some people may not agree with some of these, and that is fine. These are what I feel are important based on what I have experienced myself while caring for my children with EB, what I witnessed through a computer screen these past 30 years, along with my perspective as someone who has EB, has children with EB, and who has lost a child to EB.
Through years of research and by working with an incredible nutritionist, I learned that proper nutrition is one of the most important factors in wound healing for all forms of EB. If a child with EB is not at or above the 50th percentile for both weight and height, it may indicate they are not receiving enough nutrition to support healthy growth and healing. Because their bodies are constantly repairing damaged skin, individuals with EB often require up to twice the calories and protein of their peers, along with increased amounts of iron, vitamins C and D, and zinc. These nutrients play a critical role in promoting wound healing, supporting the immune system, and helping the body recover more effectively.
I learned that eating clean has a tremendous effect on wound healing. Sugar, cow-based dairy, fatty foods, refined carbs, alcohol, and red meat increase inflammation in wounds, which can delay wound healing. Inflammatory foods can also increase inflammation in the GI tract, leading to absorption issues.
Hydration is also vital for wound healing, kidney health, and reducing itching and constipation
I learned that daily hygiene and skin care are just as important as nutrition is for wound healing. Dirty wounds won’t heal. Dirty wounds allow bacteria to multiply and increase the risk for infections. We found that using a mild soap daily kept wounds cleaner than using wound washes, bleach, or vinegar. Bleach kills both good and bad bacteria, and when you kill off “good” bacteria, Pseudomonas and Yeast can start to grow out of control, causing more infections. And both of those types of infections are incredibly hard to get rid of and are tricky to treat in a baby, which is something we experienced with one of the kids.
I also learned that wounds need moisture to heal properly. Allowing wounds to "air dry" can increase scar tissue formation, make the skin more fragile, and worsen itching. Through personal experience, I discovered that scabs—which form when wounds become too dry—can harbor bacteria and fungi. As they harden and eventually separate from the skin, they can also pull on the surrounding fragile tissue, causing new wounds and blisters. By accident, I discovered that keeping wounds consistently moisturized and covered with appropriate bandages until they are fully healed can prevent scabs from forming altogether. This approach not only creates a better healing environment but also reduces the risk of additional skin damage caused by scab formation and removal.
After using it for many years, I discovered that Aquaphor doesn’t actually provide moisture; it blocks moisture from getting in. It also allows bacteria to become trapped on the skin, increasing the risk of infections. That is something we experienced firsthand.
I learned that you need to do your own research in wound care, wound healing, nutrition, and EB-related complications. Don’t rely on your doctor to inform you. Information in the early days can be overwhelming, but information is VITAL not only to survive EB, but to thrive while living with EB.
I learned, the very hard way, that silent reflux is a complication in EB and isn’t something you/your child will outgrow. The damage it can cause is far greater than most people realize.
I feel those who have EB present at birth would be much healthier long term if a G-tube placement was a standard practice in all forms of EB. After having two kids with EB, one had a G-tube, and one didn’t, I began to see how extremely difficult it was to maintain the needed levels of nutrition without a G-Tube. That knowledge, combined with observing all those with EB, led me to realize that those with EB who had a G-tube placed in infancy had better wound healing, better growth, less EB-related complications, and overall better health as they grew when they were fed a whole-food, blended diet than those who used pre-made commercial formula.
I learned recently that the pain and medical trauma associated with EB in infancy can affect the development of pathways in the brain, leading to an increase in cases of depression, adhd, autism, executive functioning disorder, anxiety, and sensory processing disorders in those with chronic medical issues, like EB.
I have come to realize that everyone's definition of severity is different. And that can cause a lot of tension in the EB community.
When most people hear the phrase “EB Simplex,” they assume ONLY the hands and feet are affected. That is just the case for ONE of the FIFTEEN different subtypes of EBS
Those with severe forms of EB Simplex wish other people knew that EBS doesn’t JUST affect the hands/feet. It can affect all parts of the body, inside and out. And despite what most people think, some types of EBS can be fatal.
A diagnosis of Dystrophic EB, Kindler, or Junctional EB isn’t always the worst-case scenario. ALL forms of EB have a WIDE range of severity.
Knowing your type/subtype matters more than people realize. Mild EB, or EB that is localized to the hands/feet, doesn't always mean one has EBS. Assuming it's EBS based on a mild presentation, and not pursuing genetic testing, can cause you to miss out on treatments and preventable complications.
The majority of those born before 2000 likely have a different form of EB than they grew up believing they have, but refuse to have genetic testing done. I believe the total number of cases for each form of EB worldwide would change drastically if everyone with EB has access to genetic testing.
EB can affect the entire family and requires a tremendous amount of support. When you have a child with EB, you need a village!!
We found that preventive bandaging protected the skin from damage, allowing the kids to BE kids without the fear of hurting their skin. I also feel that it allowed their skin to strengthen since it wasn't constantly being damaged. If you saw that today, you would never know they have EB. I am a STRONG advocate for preventive bandaging because it can lead to milder symptoms, fewer wounds, and overall less pain as one gets older.
Being proactive with nutrition, wound care, and medical care can help prevent, reduce, and/or slow down many of the complications associated with EB.
Genetics plays only a small part in severity; wound care, preventive bandaging, nutrition, hydration, and one's mental health (or the mental health of the caregiver) can all be factors in the overall severity.
I have noticed oral and topical antibiotics are SIGNIFICANTLY overprescribed to those with EB.
Through personal experience, research, and observation of others, I have learned that topical and oral steroids cause more harm than good in those with EB.
I have learned more about EB from doing my own research and connecting with others than I have from ANY doctor or EB conference.
EB affects more than just the skin. It can also affect the eyes, organs, muscles, bones, blood vessels, nerves, and the teeth, even in milder forms of EB. No part of the body is spared from the effects of EB.
Thirty years ago, epidermolysis bullosa (EB) was classified as a skin disease and divided into three main types: simplex, dystrophic, and junctional. Today, EB is classified into four major types: Simplex, Dystrophic, Junctional, and Kindler. Within these four types, there are more than 30 subtypes caused by mutations in 18 different genes. In addition, mutations in 23 other genes can cause skin fragility disorders that closely resemble EB. In 2020, EB was reclassified from a skin disease to a connective tissue disorder, reflecting a better understanding of its underlying biology. Today, an individual's EB subtype is determined by the specific genetic mutation(s) they carry rather than by how their symptoms appear clinically.
I have noticed that every country approaches EB differently. Most countries are reactive when it comes to caring for those with EB, instead of being proactive, even those with established EB centers.
Those with EB can do just about anything with the appropriate modifications and adaptations. The only limits we have are those others put on us or those we put on ourselves.
Those with EB don't know a day without pain or without wounds. And while that sounds incredibly sad and hard to get people without EB to understand, it's normal to those with EB.
While there is a lot of bad when caring for someone with EB, there are also a lot of good and beautiful moments in life❤️
Lastly, I have learned that the EB community is one of the most amazing groups of people I have come to know.
