Tag Archive | Inflammatory Linear Epidermal Nevus

She said yes!

Epidermal Nevus effects roughly 1 in 1,000 people worldwide. Each subtype i.e. LEN (linear epidermal nevus), ILVEN (Inflammatory epidermal nevus) or verrucous epidermal nevus, holds a different value of people effected. Less common, effecting roughly 1% of the population are congenital epidermal nevus and/or melanocytic nevus. Within an individuals type of nevus can be additional subtypes, such as Mermaids diagnosis of “epidermolytic hyperkeratosis;” which effects 1 in 2-300,000 people worldwide.

I know, because until Mermaid was diagnosed, that unless you have a personal connection to this disease, it is not something the general public is aware of. I had never in my life even heard of this disease, let alone met someone with it, and I have worked in the medical field for nearly 12 years! Hence the fact that they are considered rare genetic diseases.

When I started Mommy’s Mermaid it was out of pure desperation for contact, support and answers from others living with this disease. Throughout this process I discovered a few support groups and have gained my own following here, on my website, of both people who themselves have a form of the disease or know someone with it.

To possibly imagine that Mermaid and I would be graced by God to have another nevus owner in our own backyard was unfathomable. It seemed that everyone we had contact with was Midwest or East Coast. Graces were granted and after months of communicating via Mommy’s Mermaid, our Facebook support group and text messaging, we finally got to meet face to face with a fellow local nevus owner.

Before meeting I could never even begin to express to you the gratitude I held for our crossing paths. We are relatively new to this disease and our cohort is an adult who has been living life managing her symptoms long before we even knew it existed. The opportunity to pick her brain, absorb her knowledge, hear her courage; To place my Mermaid and another nevus owner – with significant enough struggles to match our own – in the same place, wow – words cannot describe.

The days leading up to our meeting I was nervous, like my husband and I’s first date kind of nervous. Who was I? I’m just a small town, working Mom that put together a website in hopes of finding others. I have written one other piece on a fellow nevus owner and her daughter and took a stab in the dark that maybe, just maybe, our new found companion would be willing to meet with us, share her story, and trust me to share it publically in a tactful way. I honestly expected a no. I wasn’t asking her to answer a few questions from the comforts of her home, but to physically meet in person, give us her own valuable time. She doesn’t know me from Adam, how long could we really talk? What was I going to ask her? At what point did I go from sharing our own experiences to dragging other people into this crazy ride acting like a reporter of some type?

Well folks, she said yes.

Introducing, Monica.

 It was Mermaid’s 3rd birthday. I had taken a few days off to celebrate my little blessing and what better way could we have done that than to spend it with a fellow nevus owner.

We opted to meet at a local kids play place. Given the age of our children and the weather, you really couldn’t have found a better location. It’s really kind of comical, our stories were interrupted by crying children, hungry children, diaper changes, snotty noses and just about every other possible kid related need. It sounds kind of awful but really, that’s what both are lives are like on a daily basis so it was normal and delightful to us. It felt comfortable. I only hope between all the needs I was able to capture Monica’s story correctly!

Monica is the 2nd of 5 children, a teacher by trade, a wife and a Mother of two. She has taught an array of ages and in many settings but my praise goes to her work as a special education teacher. Specifically with the Life Enrichment Education Program (LEEP); which provides specially designed instruction and related services for eligible students ages 5-21 years with special needs. The curriculum focuses on personal management, communication, practical living skills, vocational skills, leisure/recreation activities, and social skills.  Throughout her teaching career she found the humor in her disease and when asked by students what was on her leg she would drum up stories of what it was, things like she got it saving animals from a burning building, always something that made her a hero. Her stories made me laugh and I adore the ability to have fun with it. Though I have to say Monica, in my eyes, your involvement both as a teacher and time with those that have special needs, makes you a hero. Saving cats is pretty cool too though.

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 As far as Monica knows, her nevus was not present at birth. Her first real memory of its presence was grade school, with a busy Mom, remember – there were five children – it may have been present prior to that but without her speaking up about it being bothersome it may have been overlooked as just a normal benign skin condition. At that time her nevus was present only on her left leg. Around age 11 it became more prevalent and began to cause problems so  she was taken in and officially diagnosed with Inflammatory linear epidermal nevus (ILVEN).

Over Monica’s lifetime she has had 3 biopsies. The first when they lived in Northern California at age 11, which was where her initial diagnosis of ILVEN began, again in her 20’s here in Oregon and lastly, in her 30’s. So why so many? Over the years her nevus has spread, now her nevus rears its head from her  left knee down to her foot – around her big toe, with a small spot on the bottom of her foot and up the inside of her thigh. In more recent years Monica has found her ILVEN to be more bothersome than ever before. The previous biopsies were old and locating the dermatologists that performed them proved more difficult than just completing another one. The purpose was to have a clear diagnosis with her current dermatologist to move forward with treatment options. What’s interesting to me is that I have noticed the small spot on Mermaid’s under arm where her biopsy was performed has never produced new nevus, Monica has noticed the same thing. All places where biopsies have been done have not produced new nevus, which leads us both to have faith in the excision process. As Monica put it “a light bulb moment” which made the path she wanted to pursue very clear.

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There is no clear reason for why it has become more active; i.e. spreading, becoming inflamed, and itching; however, in more recent years Monica has given birth to two adorable baby angels (really, I mean adorable – her 2.5 year old son was my friend within 60 seconds of meeting me and her infant smiled nearly the entire visit, not one whimper) and she has experienced more activity with hormonal changes, especially postpartum, both times. It has come to a point where she can confidently state that it is effecting her quality of life. Itching being the biggest hinderance, which I know so many of you can relate too.

Monica recently met with her surgeon at our famously known teaching hospital; Oregon Health and Science University (OHSU) who is a specialist in ILVEN. It is difficult for me to write this next piece of information because I have struggled myself to find someone local with a real extensive background and experience with ILVEN or LEN, but her current surgeon/specialist told her that of the TWO prior cases she had treated, Monica’s presented as the most extensive case she had seen. I understand the disease is rare but there seems to be a lack of Physician’s in our area that have dealt with ILVEN/LEN to the extent we read about in larger cities and East. I have no doubt that said doctor is proficient in her abilities and perhaps our region just does not house a high number of patients with ILVEN/LEN; which would explain only seeing two previous cases and confirm the definition of “rare genetic disease”, but it is still a bit of a surprise that Monica will only be her third treated case.

As they discussed treatment options, the opportunity for laser therapy came up and her physician stated that both cases treated with laser, grew back. The treatment was done on one patient’s finger and another, on their face. I really have not heard of anyone having long-term success with CO2 treatment. It seems to be a fairly painful process with short-term results. Which goes back to the “light bulb moment” that excision was the right decision. To move forward  – Monica will need to not be pregnant or nursing, so time is the only barrier at this point.

It was such a blessing to sit down with an adult nevus owner and pick her brain about her experience thus far. We are so new to the disease that it was nice to hear the positives and negatives she had experienced thus far. Most interesting to me was a study she participated in. When Monica was in her twenties she voluntarily participated in a study at OHSU in trade for care. A group of members with skin conditions met with Physician’s and shared details about their condition. They were not allowed to tell them their official diagnosis. They shared details such as age, symptoms,  and treatments tried. With that information the panel of Providers tried to decifer what skin ailment they had. After knowing the official diagnosis they made recommendations and offered free treatment. Their recommendation at the time was cauterization. The bonus to voluntarily being there is the ability to decline treatment, which she gladly did. The idea of painful burning of the skin that smells atrocious was a pass. Interestingly enough, Mermaid has also been offered this option, which we as well, declined for the exact same reasons. Nonetheless; it was fun to hear about her adventure in guinea pig land!

I was told that nevus growing on hands and feet can cause joint pain, I asked Monica about this being that her nevus grows on her big toe and thankfully, she has not had this experience. From time to time it may crack, causing pain but only exterior pain. Monica swims on a weekly basis and has found that the warmer the water, the more she itches. The pool she attends is salt water and has not found any therapeutic connection with her nevus. Like so many nevus owners she has tried her fair share of creams and ointments with limited results but is currently using an ointment called Clobetasol Propoimate 0.05% and has found it to be extremely helpful. This medication is used to treat a variety of skin conditions (e.g., eczema, dermatitis, allergies, rash). Clobetasol reduces the swelling, itching, and redness that can occur in these types of conditions. This medication is a very strong (super-high-potency) corticosteroid. She applies a layer of the ointment and covers it with a sheet of tagaderm, leaving it until it falls off, roughly 24 hours later. She has found that it not only relieves that pesky itching but reduces the thickness of her nevus.

I asked Monica what the biggest hurdle was coming up in school and I got the exact answer I expected. Trying to explain to others that it was not contagious but would never go away proved difficult; as well as feeling as if it effected her socially at a younger age.  She wisely reminded me that bullies will be bullies, if it wasn’t her skin, they would have found something else to be mean about, they are just mean, end of story. Monica then followed her answer with a statement that I have thought about a lot since that day:

“We as people are way stronger and resilient than we give ourselves credit for.”

You are right.

Monica noted that as a Mom, it probably hurts more than being the one with the actual disease, it causes them heartache, and I think she nailed it. I often feel sad and helpless, a sense of heartache; when Mermaid is that resilient, strong person that acts as if it doesn’t exist.

The end of our conversation was about finding people who fit your need at the moment, whatever that moment is. She spoke about recently losing her Father and finding herself drawn to friends she had not spent much time with recently, but they were in the same place, and there is comfort in that. Her piece of advice to everyone new to the disease?

“Knowing you are not alone is sometimes all you need, find people with the same situation to comfort you, make that connection.”

Isn’t that the truth, after all; that’s what started Mommy’s Mermaid, the need for that connection with others in our same situation. She could not have chosen a better piece of advice to offer.

I captured a pretty special moment during one of Mermaid’s breaks from the play structure. Monica asked Mermaid if she would like to see her scales, “the ones like you have” and kindly lifted her pants to share. As that Mom that feels the heartache, this moment means the world to me. To show Mermaid that she is not alone, that other people share her special gift, to make that connection… I cannot ask for anything more.

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As Monica showed, every case is unique. Some proving to be bothersome from day 1, others later in life. There seems to be this never-ending circle for all nevus owners of trying product after product until you find the one specific to your own need. I am hoping to get in touch with OHSU and learn more about their blind trial, it would be fun to know what kind of conclusions they drew from it.

Monica – Thank you for sharing your story with us and allowing me to bring it to life. Thank you for being such a kind gentle soul. I truly felt as if we were old friends and will forever think of you that way. You will remain special to us for so many reasons. Our first connection in live flesh to another nevus owner, a reminder to keep our sense of humor around the disease and proof, that this disease does not define who you are.

We wish you all the luck moving forward with excision, we will be there to support and pray for quick healing and relief. We will continue our connection along this journey.

Today, Monica, you are an honorary Mermaid and we are the ones lucky enough to have you on our team.

Thanks for walking with us today,

Mermaid’s Mommy

Starting the year off with a bang!

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It’s been cold and rainy (as expected) here in the PNW and we even had a weekend filled with snow. The weather let up this morning and allowed us to finally get outside for a bit. While on a walk with my Mermaid we took in the beauty of where we live and I thought about how great January has been.

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With some additional time off from my normal job (though some of that was for a sick kiddo, which doesn’t really count!) I have been able to put more focus into my 4th child, Mommy’s Mermaid; and the numbers have shown. Nearly 1,000 people stopped in to see what was going on. Additionally I was able to respond to more emails and calls (sorry it took me so long to get to some of you!). I connected with a new Nevus group, met a fellow Nevus owner in person and  secured a few exciting leads on future products and trials. It really proved to me that the more time, love and effort put forth, the more I will receive in return.

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I want to thank everyone for helping me start 2016 off with confidence in our site and ideas out the wazoo! If only I had 2 of me, no 3. Ya, 3 would be good.

Coming in February I will have an update from Yale School of Medicine, A fellow Nevus owners story, and a new trial. If you have a specific interest you would like me to write about or would be willing to let us share your story on our platform please contact me.

Happy Sunday, hope you enjoy some snapshots from our walk today!

Thanks for walking with us today,

Mermaid’s Mommy

A fish tale…


The legends of Mermaids have long been discounted by modern-day society, they exist only in folklore and fairytale’s. Perhaps they never really existed, but maybe, just maybe… there is truth to those stories.

Some believe Mermaid’s are aliens, coming to us through a wormhole; others, that they are a bad omen – set out to lure men of the sea to their death, and then, the most popular are the tales of a half fish-half woman creature sitting upon the rocks and shores brushing her lavish long hair while singing to her God Neptune in angelic, hypnotic voice. These tales claim that Mermaid’s had a kind demeanor and saved many men from an uncertain fate.


Believer or not, the conundrum of a Mermaid is nothing shy of fascinating.

It is said that a Mermaid’s complexion is pale and their skin is flecked with shimmery scales. Though you may not notice this as they tend to cover themselves with their wonderous hair.



Mermaids feed on small fish and kelp. I once asked my Mermaid what she ate when she lived in the ocean and her response then and now has always remained the same. “Little fishes!” She is adamant that at no time did she ever eat crab, seahorses or big fish – only “little fishes!”

Coming from the sea Mermaid’s require hydration so their need for water is their biggest weakness. I read once that while in human form they donned webbed hands and feet.


Aquamarine, known as the “gem of the sea” is spoke of in legends to be tears of Mermaid’s that hold the power to keep sailors safe at sea. Others claim it was the sacred stone of Neptune, washed upon shore as a gift from the God’s.

Mermaid’s have the ability to control basic elements and weather, they can transform into smaller mammals and even fade away becoming invisible. They love to be free but it is said that they grow lonely and have no power of their need for love. Its is believed that this need to be loved is what brings them to the surface. Watching men from afar feeding their curiosity. during shipwrecks and storms they would save men and it is then, that they would fall in love with humans.


Ok, so maybe the idea of a half Victoria’s secret model – half tuna, lounging on the jetty stalking pirates is a bit far-fetched, but I will tell you this – something that has the ability to cry pricey gemstones and part the seas receives a glimmer of my belief. Let’s face it, I have no intentions of meeting my own uncertain fate for doubting her being.

Fact or fiction the idea of my baby once being a Mermaid has brought light to an otherwise dark subject.

As Mermaid and her lifelong pal go through life maneuvering their oddities of scales and webbed feet, they are bound to face struggles. Perhaps struggles of pain, itching and surgery, or perhaps bigger ones. The need to hide their gifts, feeling different or being teased. Together, we will face those struggles as we are faced with them. For now, if only for a while, I can enjoy my Mermaid embracing her sea life. When she tells me stories about eating “little fishes” and swimming so fast with her tail, I will smile. If she believes her scales will disappear if she doesn’t take a bath or use her special soap – I believe it too.



I recently had the pleasure of a local photographer,  who I now call friend, take interest in my blog. She generously spent a day with us, a close friend of ours and our little blessings taking pictures. Here’s the ringer – not only did she arrive at the location but brought a second photographer and a wooden sign she had purchased then had designed by another source. Her genuine desire to help raise awareness is beyond appreciated.


I cried driving home that day. I had to leave rather abruptly as Mermaid needed a nap in the biggest of ways so I never really got a chance to tell everyone what they did for me.


I choke up as I write this in a happy, humbled way. You see, time has proven that Mermaid’s case is far less severe than it could have been and our journey thus far has been relatively easy. I could stop writing about it and be satisfied with how far we have come, but I have to remember why I started this. I remember how I felt after first learning of her disease and the sense of loneliness. I remember that I longed for someone to tell me it was going to be ok. I can not tell everyone its going to be ok, because the truth is, for some, it might not. I can not think that a cute little blip about a mythical creature will warm your heart, but I can show you, through this encounter that people you would never expect to care, do. For 4 Women to lend their talents, oddities and identities to our purpose, I thank them.

You have assisted in one small step towards teaching the world about nevus owners.

I thank you for seeing our vision and letting these two little girls be portrayed as fierce, powerful Mermaid’s, if only for a day.

So today, Kinna Clark, Geneva Richardson, Coleen Papike-Robbins and Andi Hakanson, you are our honorary Mermaid’s. May you find freedom in the seas!

To see more work by Kinna Clark go to:


Thanks for walking with us today,

Mermaid’s Mommy

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Do frogs give you warts?


We have an exciting product to trial and are patiently awaiting its arrival. It’s called WartPEEL; an acquaintance and Mommy’s Mermaid follower turned us onto this exciting endeavor. WartPEEL is a wart removal product that treats planter warts, foot warts, and other warts found on skin. It is a compound medication available only in certain locations in the United States and is typically a cash product running $79.00 per 5 grams (0.17 ounces).

In 1997 MedCara’s pharmacist founders experimented with a compounded treatment using chemotherapy drugs which is marketed as WartPEEL. This compound has been used by medical practitioners to treat more than 50,000 patients.

WartPEEL is available as a compounded medication exclusively from MedCara, LLC and it’s contracted pharmacy, NuCara. Dispensing of WartPEEL requires that an appropriate doctor-patient-pharmacist relationship be maintained. NuCara Pharmacy will not fill prescriptions for patients that do not have a valid patient-doctor relationship.

What does an appropriate doctor-patient-pharmacist relationship mean? This means you cannot call NuCara and simply purchase the product on your own. You must have a physician complete a prescription form and fax it directly to their compound pharmacy.

Where Mermaid’s Nevus is not a wart she does have a problematic spot on her wrist that is thickening. This is a particular spot she picks and says hurts – so whenever it arrives we will start with a small trial on that one designated area. Considering the medication contains a chemo agent and typically isnt used in patient’s this young we will be more cautious about the usage.

We got so caught up in our busy lives we forgot to share the results of our last trial, we took pictures and documented everything and then dropped the ball. Like other Amlactin products tried in the past we saw little to no improvement but I will still post the picture and information on my “Got any secret solutions?” page with the others.

 As a quick reminder we used AmLactin Moisturizing Body lotion and below is the decription from their website.


“AmLactin Moisturizing Body Lotion has a special formula with clinically proven 12% lactic acid that’s pH balanced for the skin. Don’t let the word “acid” concern you. Especially since lactic acid is a naturally occurring humectant for the skin with a certain affinity for water molecules to help keep skin hydrated. And the more moisture that can be retained deep within the skin, the softer and smoother your skin feels. In addition, by encouraging natural skin cell renewal through exfoliation and delivering intense hydration deep within the skin, this lotion creates a soft, smooth texture.”

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During this time I again noticed no change in Physical appearance, she continued to speak about it just as much as before. At one point Mermaid developed a skin rash which I do not believe to be corrolated with the AmLactin product in any way but added a small complication.

Ultimately we came to the same conclusion as the other AmLactin products, they work for hydration but moving forward we will opt out of trialing any other versions for the soul fact that we know the extent of their use.

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Stay tuned for results and more information on WartPeel!

Thanks for walking with us today,

Mermaid’s Mommy