Tag Archive | Family

…And… We are back!

Well hello there! Welcome to 2017! We last left you a note that we were taking the holiday season off and that’s just what we did; but it’s time to dive back into things. As I’m sure you all know, the holiday season can be all encompassing. We wanted some time to focus on another project and be present in all the winter festivities. Some things went as planned and we promise to share about that later but honestly, life had a different plan for us these past few months and we went through some personal struggles regarding loss. That too, we will share down the road but I’m not quite ready to go there.

For now, let’s catch up on where we are at in the Nevus world. We gained some new followers during our break and fresh faces are always looking so I will give a quick reminder of why we are here.

My daughter was born with Epidermolytic Hyperkeratosis, specifically Aconthotic and hyperkeratotic epidermis with focal dyskeratosis including linear epidermolytic epidermal nevus and epidermolytic acanthoma, a hemangioma and a stork bite, also a form of nevus, on her neck. The hemangioma never grew, it’s the same size now as it was at birth but her stork bite, also a form of nevus, has continued to grow and her LEN has opted not to slow down. In comparison to others we feel blessed, her LEN remains light in color and relatively flat but continuously changing.

What does all of that even mean?

Broken down, it essentially means she has EHK and LEN.

Linear Epidermal Nevus (LEN) is a rare genetic skin disease effecting about 1 in 100,000 people that typically effects the limbs and torso. Her particular kind sticks to one side of the body, in our case, her left side. In infancy it is light tan and flat but will thicken, darken and often become warty as one ages. There is a possibility of skeletal, bone, ocular and neuro abnormalities that may develop; in which case it would be consider a “syndrome”; the lesions alone do not indicate a syndrome. There is a chance that the lesions may develop tumors, some benign, some cancerous. Open lesions are susceptible to infection, causing further health risks. About one in five people will experience a malignant cancer in their lesions.

There are many other forms of Nevus including Congenital, Sebaceous, giant, and closest in kind, ILVEN. It is caused by a genetic mutation in the ectoderm during gestation. At this time there is no “cure” – though there are potential medicines and procedures to help with discomfort and visualization. Occasionally, surgery will be warranted if the size or site indicate so. Excision is the only true “cure” for LEN or ILVEN. The rest is all maintenance so it all depends on how severe your specific case is.

The subtype of Epidermolytic Hyperkeratosis (EHK) is even rarer than LEN. It effects about 1 in 250,000 people and makes Mermaid’s skin fragile. There are two types of EHK, my daughter’s is the NPS type. We will explore that more this coming year. The dyskeratosis and aconthosis is a fancy way of saying there is an abnormalization of the skin keratin causing thickening.

So where are we today?

Currently, we are on our 3rd dermatologist and live day to day with what the future may hold. We have been blessed that thus far she has not developed any of the potential abnormalities and most likely wont, with one exception. Her vision, her eyes were checked about 1.5 years ago and they questioned her vision a little bit. As a result our new dermatologist recommended we follow up. We will be seeing the same pediatric opthomologist, which we LOVED,  for our second time in a few short weeks. The obvious things they are looking for are cataracts and colobomas, some people refer to an abnormality as a “key-hole.”

Additionally, Mermaid’s disease is growing on her hand, over the joints. Nothing has been set in stone but all 3 dermatologists have mentioned the potential of needing excision surgery near school age. We are a ways off from that so I can’t speak to that more than saying it is a possibility.

One of the first things we were told was to be aware of was the potential of developing “Wilm’s tumor” – childhood kidney disease. This has been controversial from source to source but nonetheless, is there. She will officially be in the clear at age 6.

Over the past few months Mermaid has developed a new spot on her back and the base of her skull that are itchy, raised and extremely bothersome. We are waiting them out to see if they progress but will probably go in to have them checked soon.

Where we are today is night and day to where we began. In the beginning I was scared, plagued with anxiety, confused and uneducated. I now have a good grasp on what we are dealing with and the anxiety has mostly subsided. I say “mostly” because there is always that lingering fear of cancer, be it in the form of melanoma or kidney cancer, that, I will never shake, though it is far from the forefront of my mind, more of a foot note.

We have grown so much as a result of my relentless research and support from everyone here at Mommy’s Mermaid.

To our new followers, we welcome you, and thank you for joining us, to those just browsing, thanks for stopping by, and for our long time friends and followers, we appreciate and love you all.

We look forward to spending the next year sharing our journey, hearing your stories and hopefully making progress and new discoveries in the nevus world.

Cheers to 2017!

Thanks for walking with us today!

Mermaid’s Mommy

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You were born to stand out!

There was a time in my life I took a “break” from social media. I personally no longer saw the need to read about other people’s every move or share mine. I was in contact with and saw the people I wanted to or used other means, like e-mail, text, this weird thing known as a “phone call” and believe it or not, I was then – and am still today – a fan of snail mail. I get really excited when a friend or some of my family from the older generation sends us a surprise. I felt satisfied with my “social contact”. However, after Mermaid was born the need to show pictures and events quicker, with those we didn’t see on a regular basis, led my husband and I to rejoin the Facebook frenzy on a joint account. I realized when I returned not only how much I missed seeing what was happening in everyone’s lives but being able to share in their joy.

Further down the road, after Mermaid’s diagnosis, my enjoyment of being back on Facebook turned into a necessity. It’s the place I found our support groups and began building relationships with fellow Nevus owners. Since deciding to start Mommy’s Mermaid social media has served as the place I identify who’s stories to share and has guided my family in many situations where we felt confused or nervous.

In staying with my commitment to help bring awareness and understanding to this disease I am always fulfilled to see others taking the opportunity to do the same on many different platforms. It’s such a brave act to share your personal story of being “different” or ask for help in times of need from complete strangers who may or may not comprehend the place you are in. Openly talking about what makes Nevus owners unique and special also runs the risk of putting yourself in a very vulnerable place with the public. To nobody’s surprise, I’m sure, there are still negative reactions to the way a Nevus owner may look and a lack of compassion for the way they feel, both inside and out.

 I was beyond excited to recently see one of our fellow Nevus owner’s take a huge leap and get featured in their local newspaper. The Manser family from Townsville, Australia shared their story about their daughter named Hope through a feature article in the Townsville Bulletin.

My favorite line in the story is when Mom, Karyn said:

“Hope was born to stand out” 

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I could not agree more, to all you special nevus owners, you WERE born to stand out, and to show the world that being unique is ok.

Below is the link to their story and I hope you take a few minutes to not only read, but really absorb their message, their fears of their daughter being bullied and their decisions to approach life teaching her how to have the resilience and self-esteem to deal with said bullies.

http://www.townsvillebulletin.com.au/news/baby-girl-born-with-giant-birthmark/news-story/554ee934c9c40ae58069cc76f21ad72e

I applaud both the Manser family and the Townsville Bulletin for shedding a small light on this beautiful little girl.

Thanks for walking with us today,

Mermaid’s Mommy