What’s to come in 2016?
As we tread towards our first full year up and running we want to give you an idea of what’s to come, If you are new to us and seeing this for the first time, I encourage you to read the very first post on our page “A tale of scales” and see what this venture is all about. Here is part of our line up.
- End of January we will be meeting up with a fellow Nevus owner face to face to swap stories and learn more about her journey through childhood to adulthood with this disease.
- I recently got an invitation to participate in a research study with Kaiser Permanente where I would provide my DNA and health information to the research center. They will use it to study how genetic and environmental factors affect health and look for new ways to diagnose, treat and prevent certain diseases. I will be looking into the possibility of Mermaid joining this study as well.
- Remember, Mermaid’s official biopsy reading was:
Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.
So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide. We are going to dive further into what this truly means long term.
- We will have a routine check up in the next few months and report on growth.
- We are hoping to change the format of our site and be able to do some give-aways of all the amazing products we have encountered from local vendors.
- There seems to be a lot questions surrounding the possibility of increased risk for a Wilm’s tumor so we will diligently research this to the best of our abilities.
- We will hold a fundraiser for a research organization and donate on behalf of all of us.
Whew… looks like we have a lot to dive into!
We want to thank each every one of our readers and followers for spending the last 9 months with us, you have changed our world and given us strength we may have never attained on our own. If you would be willing to share your pictures or stories for others to see we would love to hear from you and feature you one month this year. I remain committed to understanding all forms of Nevus and continue my personal education to speak factually about it. If you are not yet following us, it’s easy, either change the view on your mobile phone to desktop view or from your PC go to the lower right hand corner and click follow.
Thanks for walking with us today,