Why we don't use petroleum based products anymore

Since I have been getting a lot of private messages all day asking me why I dont recommend using Aquaphor on those with EB, along with messages about why i should be using it, I decided to make one LONG post about this.  I have shared short versions of the "why" in the past, many, many times over the years. But clearly the full version needs to be shared. 

When my oldest was born, the EB bandages we have today didn't exist. We had Vaseline Gauze, Vaseline and Kerlix rolled Gauze. Those older than 25 will know what I am talking about.  There was no mepilex transfer or lite or tubifast.  There was no Facebook or Instagram.  We had something called Yahoo Groups that had some groups for those with EB, but nothing like the Facebook groups we have today.  EB simplex was viewed differently back then, and very few with ebs wore bandages.  Except my kid was very severely affected by EB; massive skin loss by the time she were 4 months old.  Shortly after she was born, mepitel became available, and we used that, but had to wash, disinfect, and reuse due to cost and limited supply;  and then Vaseline gauze coated in more Vaseline on top of that, and then held on by very rough rolled gauze.  Her wounds took a long time to heal.  I felt the Vaseline made the skin more fragile (I too was coated from head to toe in Vaseline from birth to age 3-4 and often wonder if that's why my skin was so severe despite having ebs)but not wrapping her caused infections. At some point we learned that Mepilex foam was available and used by those with EB, and then Mepilex transfer became available, but I don't remember exactly what years that happened. As she for older, I started to learn about other ointments used by those with eb- aloe gel, zinc oxide and Alwyn cream.  Mepilex lite and tubifast then came out, but it was many years after mepilex transfer. 

Baby #2 came in 2004 and the doctors PUSHED not to bandage him and just use Vaseline.  That is a decision I'll regret my entire life and because I feel it contributed to his death. 

By the time my youngest was born in 2011, the majority of the EB bandages we have today, existed back then.  Also Vaseline had been replaced by Aquaphor within the EB community.  It was HEAVILY pushed on us in 2011.  We tried it, but i didn't think it was any better than Vaseline. I felt it made his skin worse just like his sister's, and like her, his skin got very severe very fast. By age 3 months, he was at 80% skin loss. I kept telling the doctors I felt like aquaphor was making it worse, but they insisted it was best for EB wounds and that we needed to follow their recommendations, otherwise it could be seen as medical neglect, and in the state of FL, that would result in being reported to social services.  

By the time he was 5-6 months old he developed a white, itchy film all over how body that would bleed if we tried to clean it off.  He was also getting neon blue drainage on his bandages. Bleach baths, that were we advised to do daily, weren't helping and I kept insisting he needed wound cultures.  The doctor finally agreed and the results came back as heavy growth of pseudomonas and heavy growth of yeast.  We were sent to an infectious disease specialist to determine the best way to treat the infections. It was too wide spread to use topical antibiotics/anti fungal medication. But he was too young for oral antibiotics and oral antifungal medication. 

The ID doctor was really nice and had worked at the EB clinic in Cincinnati berore coming to Orlando.  He asked about our wound care routine, what bandages we used and what ointments we used.  We came up with a plan to treat the infections, and hopefully avoid a hospital admission. We started alternating apple cider vinegar and chamomile tea rinses, and started using coconut oil as a moisturizer since it's natural antimicrobial.  He also highly recommended that we stop the following:

1- bleach baths. Bleach kills both bad and good bacteria. When you kill off good bacteria, you get an overgrowth of bad bacteria, like pseudomonas. 

2- baths in general and switch to showers. Sitting in a tub full of water allows bacteria to get into the water, and float to other open wounds, infecting them

3- stop using aquaphor or any petroleum based products. He said he never understood why EB clinics push them, and was one of the reasons he was no longer working at an EB clinic. He was pushed out for telling EB patients that aquaphor was actually causing more harm than good to their skin. 

He explained that petroleum-based products create a barrier over the wound, trapping bacteria in.  Even clean wounds have some bacteria on them. Then that barrier prevents heat from escaping, and when you add bacteria to a warm, moist environment, you make the perfect home for bacteria and fungi to grow. (Plus trying to remove aquaphor from the skin/wounds is difficult without having to really scrub the skin, which in someone with EB, would likely cause more skin damage) He was 99.9% sure the yeast infection was caused by the aquaphor. 

So we went home and changed our entire bath and bandage routine.  Within a few weeks the pseudomonas was gone, and it's never came back.  The yeast took months to clear up, but once it was gone and we stopped the three things he recommended we stop doing, we never had another skin infection since, and it's been 15 years. 

I will admit, I was skeptical at first, and others in the EB community said this doctor was nuts. But I started to research the benefit and risks of bleach bath; the time it takes bacteria to be killed off in bleach baths(it's not as quick as you think) and the benefits and risks of long term use of petroleum based products on open wounds.  And I started to see what he was talking about.  I asked other members of the EB community about their thoughts on all this, some adults with EB, as well as EB parents who had been around as long as I had been, had begun to notice the same thing about bleach baths and aquaphor. Some EB moms started looking at each individual ingredient of aquaphor and the long term risk of continually use. And then the immediately started looking for other non petroleum based options for wounds. Which told me they didn't like what they were finding either.  Those moms tried to share what they were learning, but were hit with very negative responses from others in the EB community. So they stopped sharing. 

The more research I did, the more questions I had. I emailed the head of dermatology at all the EB clinics in the US at that time, along with some around the world. I asked if there was any data, research or proof that Vaseline/Aquaphor actual helped EB wounds heal, not just faster, but at all. I wanted studies, articles, or some scientific evidence to prove I was either right or to prove i was wrong, and all I got was, "I am not aware of any at this time" or i actually haven't looked for any." Then my follow up back to the few who actually replied to me, was "then why do you promote aquaphor so much on your clinic?"  And their answer was the same: 

"because it's cheap and widely available"🤦‍♀️ 

That spoke volumes to me. 

Doctors and researchers are just now making the connection between the food those with EB eat, and the affect it has on wound inflammation, wound healing, and ultimately the potential connection in developing skin cancer related to chronic inflammation.  And I truly believe eventually they will start looking at what we are putting ON our bodies as well.  It's already known that long term use of silver ointments and silver infused wound dressing can cause organ damage; overuse of topical antibiotics caused resistance, and long term use of topical steroids has a whole host of long term side effects, especially on children. So it's really not far fetched to think some day they may connect petroleum based ointments to long term side effects. 

It's become very clear to me in the past 24 hours that a great number of people in the EB community still use Aquaphor on themselves/their child's without researching the potential risk and/or benefit of using it long term. Or if they have done the research, neglect to mention they have.

My comments on posts aren't stuff I have pulled out of thin air; it's based on YEARS of research and YEARS of personal experience both as someone with EB and a parent of 2 with EB.  

I can't force anyone to accept my opinion on this or on anything else. I can only share what I have learned over the course of my life and hope people will take pause before coating their child's entire body with aquaphor day in and day out.  I hate to see anyone suffer the same side effects we have suffered; those with EB suffer enough as it is. 

And just so I don't get a ton of comments and messages about what we use instead of Aquaphor, I'll list them here: 

Wounds- Organic unrefined Coconut Oil, Hydrogel, zinc oxide, and Burt's Bee Multipurpose Ointment. 

Intact, un damaged skin- organic unrefined coconut oil, organic Shea butter and Cerave SA cream (this will burn on open skin, even a small cut)

30 years in the EB Community

 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.

1. 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. 

2. 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.

3. Hydration is also vital for wound healing, kidney health, and reducing itching and constipation 

4. 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.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

11. 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.

12. 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

13. 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. 

14. 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. 

15. 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. 

16. 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.

17. EB can affect the entire family and requires a tremendous amount of support.  When you have a child with EB, you need a village!! 

18. 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. 

19. Being proactive with nutrition, wound care, and medical care can help prevent, reduce, and/or slow down many of the complications associated with EB.

20. 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.

21. I have noticed oral and topical antibiotics are SIGNIFICANTLY overprescribed to those with EB.

22. 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. 

23. I have learned more about EB from doing my own research and connecting with others than I have from ANY doctor or EB conference.

24. 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.

25. 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.

26. 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.

27. 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.

28. 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.

29. 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❤️

30. Lastly, I have learned that the EB community is one of the most amazing groups of people I have come to know.

Long-Term Use of Auqphor/Vaseline

 Dangerous Long-Term Use of Aquaphor/Vaseline

It is hard to remove effectively from the skin/wounds without damaging the skin

It smoothers the skin and doesn’t allow it to breathe; skin needs to be able to breathe

It holds in heat and can actually raise body temperature when you cover most of the body in Aquaphor

It isn’t a moisturizer; it is a barrier ointment that keeps things out, but also traps things like bacteria and fungi in wounds.  That, combined with the heat it causes, creates a warm, moist environment for infections to grow.  It's been shown in studies to increase infections in those with EB.

It can cause skin breakdown for some due to the constant moisture

The main ingredient is petroleum, which is carcinogenic 

Alternatives to Aquaphor/Vaseline

Coconut Oil

Sunflower Oil

Burt’s Bee Multipurpose Ointment

Honest Company Multipurpose Ointment

Hydrogel Wound Ointment

Anesthesia and Hospital Guidelines for those with EB.

The most recent anesthesia guidelines 

for those with EB 

In Loving Memory: Akuminto Imihle Mjongile

Below is the store of Akuminto, as shared by her mother 💗

My name is Sisipho Mjongile, and I'm from Cape Town, South Africa. I'm a Mother to an Angel Baby, Akuminto Imihle Mjongile.

Akuminto was born on the 20th of May 2025 in Mawbray maternity hospital at 16:14 pm. Soon after birth, I recognised that on the left hand, she had missing skin on her fingertips. I called the doctor to see, and the doctor said it may be just a minor, maybe the baby was sucking her fingers while she was inside. I said ok went to the ward to get some rest with my baby is right on my chest for the skin-to-skin bond after birth. At night, I'm changing my baby's nappy, and I find a blister in her stomach and missing skin on her hands and elbows. started shaking and was shocked. I called the nurse, and the doctors came, and they said the baby needs to be taken to high care immediately to be admitted. After that time, I'm still having after-birth pains. Oh my god, what's going on with my baby? On the 21st, the Mawbray doctors were in touch with the Dermatologist from Red Cross Hospital, so they were sending pictures of the wounds, and they were told that the baby has Epidermolysis Bullosa. The baby needs to be on dressings, so they sent the dressings. I was so shocked because I had never ever heard of this disease. Immediately, my baby was taken to the ICU in an isolation ward. I was so shocked, I never thought a skin condition could be so serious to the point that we could be in the ICU. She was so strong and beautiful in that incubator. The Dermatologist from the Red Cross came to us in Mawbray. She explained to me about the EB, and its subtypes, so she did a biopsy test. I was exclusively breastfeeding, so I had to hold Akumi, but I noticed that even holding her during breastfeeding it was causing her blisters under her arms. That means her skin is fragile. The other day, while I was breastfeeding, I found some blood coming out of her mouth. I stopped and checked that it was her gums. I cried out loud, calling the doctor. Her mouth was also sensitive .

They put the feeding tube in her, and the bum area also started having a blister. Along with the back of her neck, things started getting worse. We were using the paraffin gauze dressing it wouldn't stick on her wounds, but it was just digging into the wounds, making them worse. I was complaining to the doctors about it, but they couldn't do anything because it's the only dressing they have. I didn't like the fact that my baby had a feeding tube, so I was trying to breastfeed her. At first, I noticed she was not taking it to her mouth because it was sore, but as time went on, she was fine with breastfeeding, and I was taught how to do her dressings very well. We were discharged after 3 weeks. Then we were attending the Redcross Hospital 3 days a week-Monday, Wednesday and Friday. Then we were referred to Peadspal for support because it's a devastating disease, and no cure. So we got the biopsy results that she was having Junctional EB, and her voice was now hoarse, and she was losing her fingernails and toenails. Every day, there were new blisters and pain. Every day, she was on morphine for pain. Sometimes her fingers and toes would smell because of infection; that would hurt me big time. We went to ENT clinic in REDCROSS so that they could check her esophagus. She had blisters in there as well, but they were not too big, so she was fine. She was feeding and breathing well, but she was struggling to gain some weight. Her birth weight was 3,66kg, and she was getting lower than that, or just remained on her birth weight. So we were also seen by the dietician to help with that.

She was just a strong baby girl because she was going through pains. I got to know everything about EB and the Junctional type that she had. I just accepted and loved my baby the way she is, enjoying her life while she is still with me. She was reaching 3 months when she started having the baby talks, and she would look straight in the eyes while doing that; she was smiling and laughing. I was so amazed and enjoyed having her. Then on the 21 of August, soon after she entered her 3rd month, we were admitted to Redcross hospital in the high care unit. It was her appointment date in Peadspal and in Redcross for her dressings, and being seen by her Dermatologist. We started in Peadspal the baby was fine, and I noticed nothing wrong. Then we went to Redcross it's just across the road, but they transported us there. When we arrived, the baby was crying nonstop. We were in a lift with a nurse when she recognised that the baby was not breathing well. Then we rushed her to the Emergency unit to be hospitalised. The baby was diagnosed with a lung infection, and they also said she had no blood, so they did a blood transfusion. To me, in my mind, I just knew that it was a very hard time because I read a lot about the Junctional EB. She was on CPAP oxygen, and on day 1, she didn't sleep at all. She was crying and moving all the time the whole night. We didn't know what was wrong. On day 2, I noticed she was breathing with her mouth, and her mouth had sores on the inside. My baby was also pale on the face; she couldn't breathe while she was on oxygen, so she died right in my Armson the 24 August 2025.

This is the wrist I found with missing skin in the night

The missing skin on the fingertips

Starting of the blister in the bum area

That's how the gums looked after bleeding. She was on a feeding tube after bleeding, that's how the whole body looked like without dressing, while we were in Mawbray Hospital, that's how the bum side was, and the toenails before they were infected

How the whole body looked, and the toes after being affected and the finger nails affected, they would grow and fall out again

When it's bath time, she would be crying, and that's the first day of admission and the first night she was not able to fall asleep because of pains and itching, and that's how beautiful and adorable she looked