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 Also Vaseline had been replaced by Aquaphor within the EB community.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)
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