Today, we have the opportunity to learn more about the story behind the ScratchMeNot products. Founder Andrea Thomas shares her story dealing with her children’s eczema and how that inspired her to develop the ScratchMeNot Flip Mitten Sleeve.
Can you share your story as an eczema mom?
“Her skin is at least 75% healed and we not used a single oral medication or prescription cream on her since we started using the ScratchMeNots. No one can believe the difference, and asks if we finally found a medication that works. Haha! I tell everyone about your company and show everyone her pretty sleeves and tell them we don’t use meds on her anymore. I’m so glad she is happy to wear them and doesn’t have to wear socks on her hands all the time anymore that would stick and hurt her. Plus, she could still scratch with those.”
Today we feature an interview with Julie Block, President and CEO of the National Eczema Association (NEA). Over the past 5 years, Julie has been leading NEA’s mission to support and educate patients, and promote scientific progress in the fight against eczema.
The National Eczema Association (NEA) is the premier patient-oriented eczema association in the United States. Can you share with us how NEA started?
Originally the organization was called the National Eczema Association for Science & Education (NEASE) and was formed in 1988 in Portland Oregon. Dr. Jon Hanifin, a preeminent dermatologist and eczema researcher, knew that his patients battling this chronic condition needed more support and information. He, along with Nurse Practitioner Susan Tofte and patient Irene Crosby started a patient support group, and the rest is history as they say. The association moved its headquarters to California in the early 2000’s, and has been on a solid trajectory providing eczema education, support and funding research, ever since.
What is the mission of the NEA?
NEA improves the health and quality of life for individuals with eczema through research, support, and education.
How did you become President and CEO of the NEA?
I have devoted my career to non-profit leadership and am privileged to serve NEA now.
How have you seen NEA grow over the past 5 years as leader of the NEA?
NEA continues to educate and support more and more eczema sufferers and their loved ones each year. As well, we have funded close to $500,000 in eczema research. One of the biggest changes has been communication through social media channels, as you can imagine. NEA has increasingly engaged in advocacy efforts – for example, ensuring access to phototherapy, and for increased federal research funding to NIH. Our outreach to physicians has been ongoing during this time to provide eczema resources that improve their patients lives.
Support, awareness and education are very important for patients and families with eczema. What is the biggest piece of advice you have for our readers without eczema in how they can support patients and families with eczema?
Great question! Don’t tell anyone “Stop Scratching”…its near impossible and just makes the person with eczema feel bad.
How can readers get involved with the NEA locally or nationally?
Your readers can get involved in a host of ways: participate in a local Itching for a Cure Walk! Create a team, fundraise, and join the entire eczema community across the nation in either a virtual walk or the national walk being conducted that year. We always are in need of magazine article submissions, and website content that is personal. Start a local support group with an eczema patient and or caregivers – its easy! Clinicians and researchers will have an increasing opportunity to get involved in NEA advocacy to improve eczema care and assure access and affordability. Stay tuned.
Over the years, NEA’s support of scientific research has been critical for advancing our understanding and treatment of eczema. Can you share some of the most exciting findings of these projects that NEA has supported?
Two specific NEA seed funding projects come to mind. First, Dr. Eric Simpson of OHSU studied eczema prevention in high risk infants. This research grant was parlayed into an international effort to study the same, and was awarded NIH funding. Secondly, Dr. Gil Yosipovitch received two research grants from NEA on itch, specifically Pruritus in Atopic Dermatitis using Arterial Spin Labeling Functional MRI and The Effect of Visual Stimuli on Itch Perception Intensity in Healthy and Atopic Dermatitis Patients. These projects too led to NIH research grant funding and have contributed greatly to the body of research knowledge on the underserved study of itch.
So much work remains to be done in eczema. What exciting projects is the NEA currently supporting and what endeavors will NEA be undertaking in the coming years?
Now, for the first time in decades, there is a healthy pipeline of new eczema drugs in development, including the first biologic drug for eczema. All this development will bring profound change for eczema atients. It will also bring misconceptions and bewilderment as patients, payers, medical practices, government and medical academia all scramble to understand eczema’s changing healthcare landscape as it retains to their respective needs. NEA wlll soon launch a Roadmap to Advocacy to usher in this Decade of Eczema. The roadmap is a blueprint for change, a vision that will propel NEA into a leadership role in this new era of transformative care.
Today, we feature an interview with Laura Veralla de Bertotto (LVB), CEO of VMV Hypoallergenics, and her mother Dr. Verallo-Rowell (Dr. VR), a dermatologist and dermatopathologist who helped found the company with her husband. VMV Hypoallergenics was found in 1979 to provide hypoallergenic skin care products.
How did you decide to start VMV Hypoallergenics?
LVB: My mom started it basically because she had so many patients who needed options and it was her research interest. She trained under doctors who really believed in patch testing, and she saw an increasing number of patients with contact allergies and acne. She also had trouble finding options for them without allergens and began making formulations without them. My father was a patient with adult acne which she cleared and, after they were married, urged her to sell them commercially. She balked at the idea of promoting a commercial brand (we still have to send her med reps 🙂 so the compromise was: she would remain the “cook” (formulating and publishing papers based on her research) and he would handle the business, but couldn’t use her name (she agreed to “VMV,” her initials).
What is the mission behind VMV Hypoallergenics?
LVB: The safest, most proven effective care on the planet.
At the time that my mom started, there wasn’t a lot of understanding of hypoallergenicity. There still isn’t all that much regulation for the term. She created the VH-Rating System which is like an SPF rating for skin safety: the higher the rating, the more allergens are NOT in the formulation. It was the first of its kind, is still the only such rating system of its kind and is published in one of the leading contact dermatitis journals. And it’s objective, based on published allergen lists from leading organizations who regularly do patch tests on thousands of patients.
In addition to safety, she wanted efficacy (she’s a dermatologist-dermatopathologist, after all, and handles hospitalized patients…so efficacy is a must). From our earliest days, we backed our claims with evidence-based clinical studies (randomized, double-blind) and she published many of them in peer-reviewed medical journals.
That’s pretty much the heart and soul of all that we do.
How has VMV Hypoallergenics evolved over time?
LVB: Her patients and our clients have “forced” us to evolve 🙂 She saw an increase in peri-oral dermatitis, we made a toothpaste for it. We saw an increase in rosacea needs and there not being a hypoallergenic option, we made a line for it. Her research showed melasma due to visible light exposure from indoor light…we made an indoor-outdoor sun and light screen for daily use. And our own family’s needs have shaped how we’ve grown. When I was pregnant, I didn’t see any fragrance- and allergen-free options…considering our genes (I’m fragrance-allergic and had acne; my husband has rosacea and seborrheic dermatitis; my sister is a walking sneeze 🙂 I begged my mom for a baby line. And it’s turned out to be so helpful to other parents with kids with sensitive skin.
We started with a very simple regimen then grew to offer over 300 SKUs for men, women and children of all ages, from skincare to hair-bath-body care, makeup and more.
How have you brought your knowledge as a dermatologist and dermatopathologist to the company?
LVB: My mom is the consummate researcher. She STILL sleeps at crazy hours, nose deep in a journal or eyes stuck to the laptop screen…still researching, researching, reading, reading, writing, writing. What she reads, what her patients show her, how they react to her formulations…all this goes into our products.
The nice thing, too, is that as a dermatopathologist, she has such a strong understanding of skin CELLS and diseases. This may sound like overkill for cosmetics but it has given us a far better understanding of why, for example, virgin coconut oil is so effective (its fatty acids are native to skin; it improves the balance of cell walls; it provides barrier repair and anti-microbial action) than simply reading a supplier’s documentation.
As a dermatologist who’s both a researcher and a clinician, she gets to see a tremendous amount of patients and explore innovative treatments with them. We benefit from this greatly…and when we put a formulation into production, so do the patients.
And, from its inception, she’s published her research, which has gone into new formulations, then products, which then helps to fund more research, etc. in a wonderful cycle.
DR. VR: It’s interesting because I never think of myself as the company. I see patients and think of new formulations based on their needs and my research. Almost everything starts as a formulation in our pharmacy and clinical studies. If we see something really helpful to patients, I’ll mention that it address certain needs and then the kids take it from there. I don’t get involved in the commercial aspect of it. It’s been a great experience in terms of innovative treatments because I really get to try new things that excite me and see wonderful results with my patients.
Can you share some success stories?
– Earlier this year, we had a mom contact us because her 4 year old son was diagnosed with contact dermatitis but had misdiagnosed twice before he had a patch test (and because his back was too small, he had to have it done twice!). He had been prescribed steroids, but he turned out to be allergic to it. He was miserable — his mom was sleeping with him at night because he was so itchy all the time he would scratch in his sleep until he bled. We started him with a 7-day skin fast, where he used minimal products, and then he began using our Boo Boo Balm on the ‘rashy’ areas. It worked — it calmed his skin down significantly, so much so that his mom asked if we could get a custom tub for him since they were using so much! His skin is so much better now, using the Essence Bath/Body products for prevention.
– We had another mom reach out to us because her daughter had curly, hard-to-tame hair, but every shampoo and conditioner she used caused contact dermatitis around her neck, and seborrheic dermatitis on her scalp. She also started with a 7-day skin fast, and then was able to use the Essence Clark Wash and Conditioner. The conditioner is a godsend because it means post-bath time is a much easier time for mom and daughter!
– A wonderful customer of ours wrote in to say how she couldn’t use a shampoo for 20 years before finding ours.
– We have a customer with chronic discoid and subacute cutaneous lupus erythematosus who wrote us a very heartfelt letter because she can finally stop wearing gloves and hats (Armada 70 sunscreen protects her perfectly).
There are many, many we can share, from psoriasis management to acne, hyperpigmentation and more 🙂
What new developments are on the horizon?
LVB: We’re making allergen-free options in kid’s makeup and face paint, our laundry detergent, US monograph sunscreens, and several more in the pipeline.
Today we feature Kelly Northey who created the Bamboo Bubby Bag for eczema and learn about her story. Kelly is also mom of an eczema child.
What was your inspiration behind the Bamboo Bubby Bag?
The Bamboo Bubby Bag was born back in 2010, when I was a new mum to a 6 month old baby, who while was completely gorgeous, had suffered eczema since he was born.
Thanks to the discomfort this caused him, he’d barely slept longer then 30-40 minute stints day or night for that entire time. To call us sleep deprived was an understatement!
We tried everything we could possibly buy from pharmacies to give him some relief while we waited for doctor and specialist appointments, but nothing really seemed to help a lot. We quickly found that there’s often no quick fix for eczema and each day seemed a month long when nothing seemed to solve the ongoing battle we had with sleep every single day. We found that some of our baby’s sleep time scratching was minimized while he was young enough to be wrapped or swaddled tightly (as long as he didn’t fight his way out of it, which he often did), but this all changed dramatically when at 6 months of age he learnt to roll, meaning an end to being able to be wrapped safely, as babies need access to their hands to be able to roll themselves back over.
I started then using baby sleeping bags with him and found that it was long sleeved ones that worked best as I could use a larger size and try to fold over the ends of the sleeves so he couldn’t scratch as much, however all the long sleeved ones were designed for cold weather and being an already hot, flaring eczema baby were too hot for him and yet all the lightweight summer type ones which he slept better in were sleeveless.
So one day out of frustration I made him one that was of a fabric that wasn’t too hot or too cold for him and with enclosed sleeves that could be adjusted as he grew (another frustrating and expensive thing is having to upgrade sleeping bags every few months) and this worked fantastically for him!
Having his hands enclosed with a soft fabric meant he was still able to have the free arm movement required roll around in his cot as needed but the damage he could do to himself from scratching was drastically minimised and for the first time his skin was getting a chance to heal. The sleeping bag also had the added bonus of helping to keep his layers of creams on his skin longer which also helped a lot.
What was your motivation behind starting Bamboo Bubby?
Once we had used the first version of the Bamboo Bubby Bag for a little while and could see how beneficial it was to our son and that it worked alongside other treatments both natural and conventional, the seed for the Bamboo Bubby business was planted when I would take his sleeping bag with him to day care and the childcare workers would all tell me how great they thought it was and just how many other babies they’ve known over the years who could have used one!
I loved the idea of being able to help other families just like us and so I started the process of finding a way to manufacture them, sell them online and also started the Bamboo Bubby Facebook page.
The rest is history and Bamboo Bubby has grown dramatically in the past four years here in Australia as well as overseas including online stores in New Zealand (www.bamboobubby.co.nz) and the UK (www.bamboobubby.co.uk) to allow our products to arrive to parents faster. We also have stockists and distributors all over the world including the US and have fantastic partnerships with complementary product manufacturers like ScratchMeNot in the US who create the ScratchMeNot Flip Mitten Sleeves and Body Suits which we distribute here in Australia and New Zealand as part of the Bamboo Bubby range and also Soothe in the UK who have create a range of eczema pyjamas for adults.
How did you see your child change after using these products?
The change for our baby after using the Bamboo Bubby Bag for just a few sleeps was quite dramatic. He used to scratch his head a lot and within minutes left alone in his cot would have scratched badly, causing bleeding, infection and a never-ending itch-scratch-wake cycle. By having his hands covered in super soft fabric, this scratching damage was minimised and his sleep started to improve.
The other great bonus for us in using the Bamboo Bubby Bag was that the sleeping bag became part of his bedtime routine and a sleep queue for him. When we’d put him in it, he’d associate it with calm and peace and it helped a lot to also minimise some of the anxiety we all had around bedtime after so long without proper sleep. He’s now 4 years old and while he no longer fits in his Bubby Bag, when he gets a bit sick and run down or has an eczema flare up he will still go and find his Bubby Bag and likes to sleep with it like a comforter blanket!
Can you share some stories from other parents with eczema children?
I hear A LOT of eczema stories back from customers, so many that I’ve started collecting them and publishing them on the Bamboo Bubby Blog because while everyone’s eczema journey is quite unique, we often all do feel the same frustrations and isolation when it is our babies especially who are suffering it. Reading the stories of others in the same situations can really help during this time as well as the fact that these stories are full of helpful tips and tricks that someone else might not have thought of yet or heard about to try!
Have you found health care professionals to be knowledgeable about products for kids with eczema?
We found the allergy clinic specialists very knowledgeable about products to help our child with eczema and did come away from appointments with names of products to go and buy and try which was great. We’re also continually working now to make Bamboo Bubby products known to these specialists so word of them can get to the people who are needing them the most.
What is the most helpful advice you have been told regarding eczema?
A dermatology nurse gave us the most helpful advice regarding our baby’s eczema and it was something that no one else had ever mentioned before about the importance of layering moisturisers to lock the moisture into the skin as much as possible. Once we started doing this using prescription ones first (if we were using these) followed by thinner ones and then finally the really thick, intensive type, it really helped us battle the dryness and helped the healing as well. I tell that many people now about this, that I wrote about it here to explain it better: http://www.bamboobubby.com.au/blog/what-is-the-best-moisturiser-for-baby-eczema/
What is in store for Bamboo Bubby’s future?
I’m really excited about the way Bamboo Bubby has grown in such a short period of time to now be helping thousands upon thousands of children worldwide with our unique range of specially designed bamboo clothing products. The future is also exciting as we have in development a new version of the Bamboo Bubby Bag for warm climates. Bamboo Bubby is also starting to ‘grow up’ and into a new range called Bamboo Buddy that will help older children with eczema as well as many adults who continue to suffer the condition. We aim to be able to soon help soothe sensitive skin across all ages and help everyone get a good night sleep!
Today, we feature an interview with AD RescueWear, the company the produces Wrap-E-Soothe clothing and sleeves which make wet wrap or dry wrap therapy easier.
What was the motivation behind starting AD RescueWear?
Beth Scott, President of AD RescueWear, has a son with eczema. Beth’s son Harrison was diagnosed with full body eczema and a staph infection. She was told to wet wrap her son at home by her son’s allergist. At this time, the only option in the U.S. was a home-made wet wrap therapy system that included wet cotton pajamas, tube socks and duct tape. It was less than ideal! The wet cotton pajamas were baggy and rough and since they didn’t stay close to his skin, they were cold. She had to put wet tube socks over his hands to treat and prevent scratching which were also heavy and baggy. Her son kept removing the tube socks covering his hands, so her child’s physician recommended duct taping the wet socks on her child’s wet cotton pajamas. When she went in the crib the next morning, her son had blood all over his face from using the duct tape to scratch! At this point Beth decided there had to be a better way to wet wrap. When she couldn’t find specialty medical undergarments for wet and dry wrap therapy for treating eczema, she decided to invent and manufacture them herself to help her child and all the children suffering throughout the world. The Wrap-E-Soothe product line was designed for quick, effective treatment that is also comfortable and soothing for the child.
What was the inspiration behind each of the products?
Beth saw firsthand how effective wet wrap therapy was for stubborn eczema. It can be life changing for a family struggling with eczema. Eczema can be so miserable for the child and the parents. Studies report that when a child has eczema it can affect the entire family. These studies report eczema can cause poor family relations, poor work performance in parents from sleep deprivation and affect children’s performance in school including learning disabilities in children from drowsiness and itching. Eczema can also negatively influence social relationships as eczema can be unsightly and others may think it’s contagious causing the child to feel excluded and isolated. The inspiration behind the Wrap-E-Soothe products are the suffering children. Wet wrap therapy through the Wrap-E-Soothe products give parents a tool to successfully manage their child’s eczema.
Beth spent two years searching for the right fabric and when she discovered all of the great attributes of Tencel® she knew it was the perfect fabric for wet wrap therapy. It is one of the softest fabrics in the world and stays soft even when wet. There is a small amount of spandex added (6%) for stretch, so the garments are easy to put on and stay close to the skin for effective treatment unlike cotton that gets baggy, loose and uncomfortable when wet. The fabric is eco-friendly and has a wicking effect that not only cools the itch during treatment but greatly inhibits the growth of bacteria on the fabric. The anti-itch properties of the Tencel® fabric is what helps calm the itch during treatment allowing the whole family to get some sleep while the wet wrap therapy treatment heals the skin barrier. AD RescueWear is very proud to offer the Wrap-E-Soothe product line that is not only quick and easy for the parents yet comfortable and soothing for the child. We are the only company worldwide to offer these features.
Did you work in collaboration with your child’s health care professional?
Beth did consult her child’s physician, Mark Ebadi, MD with Colorado Allergy and Asthma Centers and he introduced her to Mark Boguniewicz, MD, Professor, Division of Pediatric Allergy-Immunology, Department of Pediatrics, National Jewish Health and University of Colorado School of Medicine who she was also able to consult about the Wrap-E-Soothe product line.
How did you see your child change after using the Wrap-E-Soothe products?
Beth saw a huge difference after just one night using the Wrap-E-Soothe products and it was much easier and comfortable to manage her son’s eczema. He used to scratch all night at the back of his knees and she would wet a wash cloth and hold it on his eczema. This was tiring. Her son has eczema on his calves and behind the knees so when she sees the eczema start to flare, she uses the Wrap-E-Soothe pants or sleeves under his regular pj’s and this clears the eczema and allows him to sleep through the night.
Can you share some stories from other parents with eczema children?
We receive phone calls and e-mails from parents all over the world that say our products have been life changing for their families. Below are a few favorites.
“Thank you all for helping make my little 2 year old’s life that much more comfortable. Through the use of your suit and her doctor’s treatment, she is a happier and healthier little person. Thank you!” Thomas
“Dear AD RescueWear, Just wanted to say a very big THANK YOU for creating a product that works! My 4 year old has eczema on her legs, knees and all over her feet for the last 2 years. As a mother it’s heartbreaking to watch her tear herself apart with the constant scratching. I don’t remember the last time she (or I for that matter) had a full nights sleep until we tried your pants and wet dressing! Amazing! So thank you from us all. I will be highly recommending you to anyone who’s child suffers from eczema!” Vanessa
“Our son has extreme eczema and is considered in the 2% of the worst eczema that Doernbecher Children’s Hospital has ever seen. Their answer to solve it was to use steroid cream. The only catch was using the steroid cream lowers his immune system and he becomes sick very often. It was like putting a band aid on it and not getting to the root cause. It was also like trading one problem for another. Now our son not only feels better he looks better also. It has been a blessing that we came across your product. We can’t start to tell you how much your product has helped our youngest son. So in leaving, thank you from the bottom of our hearts.” Aaron and Danielle
Have you found health care professionals to be knowledgeable about products for kids with eczema?
We have found that once the health care professional sees how wet wrap therapy can manage eczema through our products they start recommending it for their patients.
What is the most helpful advice you have been told regarding eczema?
Correct daily skin maintenance and learning the eczema triggers will help control and manage eczema. Eczema triggers can be irritants such as laundry detergent and soaps and also allergens such as pets, pollen and dust mites. Or it can be a food such as dairy and gluten. If you can find out what the triggers are you can remove them from your child’s environment and minimize symptoms. Correct daily cleansing of the skin to wash away any allergens is very helpful. Daily skin maintenance and using “The Soak and Seal” process before wet and dry wrap therapy can manage eczema and allow the skin to heal. We recommend using Vaniply after soaking in the tub. It is a wonderful skin protectant and seals in the moisture from soaking in the tub. We recommend people visit the National Eczema Association for products given their Seal of Acceptance at www.NationalEczema.org. We also developed this great graphic to easily explain the wet wrap therapy process for parents. Please see below.
Today we feature an interview with Mei, also known as @MarcieMom. Mei started blogging about eczema and helping eczema families in her unique way since 2011, a year after her daughter Marcie was diagnosed with eczema. She co-authored Living with Eczema: Mom Asks, Doc Answers and illustrated the book cover and another children’s book A to Z Animals are not Scratching!. Mei chairs a national eczema support group in Singapore and donated to set up a fund for eczema patients requiring financial assistance. She has helped many parents through her blog EczemaBlues.
In our previous post, we reviewed her book Living with Eczema: Mom Asks, Doc Answers. MarcieMom has also been a past contributor to DermBytes, blogging about her experience as mom to an eczema child and sharing her top tips for taking care of eczema.
Q: What was your inspiration behind writing the book?
I was invited by my daughter Marcie’s doctor, Professor Hugo van Bever, to co-author the book. It was an excellent opportunity to share what I know about eczema and ask all the questions a Mom would have, thus the unique idea behind the book Living with Eczema: Mom Asks, Doc Answers! From the onset, we wanted this book to be practical for parents and practitioners; it’s also 100% authentic – I asked the questions and Prof Hugo answered, we didn’t screen out each other’s questions or answers!
Q: How did you decide which topics to cover?
We group the topics from first giving a background to eczema, with the majority of the chapters centered on practical aspects like diagnosis, skincare and treatment, followed by future research. It is intended to be comprehensive but not too complicated. For the questions, it’s from my own experience blogging, replying to comment, moderating eczema forums and also, an extra pair of eyes from the lovely Amanda of Nottingham Support Group for Carers of Children with Eczema.
Q: How was the partnership in working with Professor Hugo? Did working closely with a healthcare provider lead to any new insights?
Professor Hugo was most gracious – we had an equal partnership in all aspects, from the title, to chapters, to splitting the writing work (he covering the more technical and I writing the more practical), to doing what each is good at (he had the overall responsibility of ensuring medical accuracy while I did the administrative part).
Professor Hugo has a very straight forward approach to his patients – be honest and listen. I remembered that I did not feel rushed at all during the consultation sessions my daughter had with him. Similarly, I didn’t feel rushed or ‘clerical’or ‘subordinate’in my collaboration with him and he respected my views on the book.
Q: Did you learn any new things while working on the book?
I did learn quite a few technical parts of the skin but then I quickly forgot them!
Q: Can you share some feedback you have received from other eczema caregivers?
Our book is recently launched so much of what other eczema caregivers said were ‘where to buy the book?’! Bloggers we sent the book to appreciate the practical and comprehensive aspects of the book.
Q: This is now your second book! (The first being a children’s book that is distributed to eczema support groups.) Any additional future writing plans?
Yes! I have a quarter-baked novella on being a mom with eczema kid, purely fictional (ahem!) but I haven’t got the inspiration to proceed till the end yet. It’s intended to be romance novel though, but since, I’ve fallen in love with thriller instead but it’s so much more difficult to write a thriller!