By Elizabeth Horverman

My name is Elizabeth and I am an artist. I am also modern, old fashioned, hardworking and loyal. I am adventurous yet cautious, petite yet feisty.

And I am affected by a rare birth syndrome called ectrodactyly-ectodermal dysplasia-clefting (EEC) and which affects my skin, eyes, teeth, fingers, hair and other systems of my body. You might look at my missing fingers or bent fingers and other skeletal deformities and label me as disabled. But that is not how I or other people born with physical differences see us.

We are complete and complex just like all of you reading this. You are not defined solely by physical features and neither am I. People with disabilities may communicate in a different manner, may hold a brush, pen or computer mouse in an uncommon way or move atypically. We just do common things in an uncommon way.

Color Me Creative

I have always had a passion for colors and working on anything creative. However, I did not formally pursue more direction with art until my last year in high school. I had been having difficulty deciding what path to follow in college and my parents recommended that I take some testing to find out what my natural strengths are.

The results indicated my ability to perceive colors was very high. Now I understood why I always liked to play with color combinations in various ways. My high school teacher accelerated my curriculum so I would have an art portfolio for college applications.

My first choice for college was Bowling Green State University in Bowling Green, Ohio. They were an early leader for featuring degrees with digital technologies and art. They accepted me upon seeing my portfolio and offered me a small scholarship based on my talent. This scholarship would be the first of several financial prizes to date but that’s another part of my story!

Life with EEC

You might be asking yourself how my EEC factors in. Living with EEC has been rough. My parents and I stopped counting the surgeries at 30 that were required to restore or repair function to the various parts of my body.

Each of my hands is missing two fingers and the middle finger is permanently bent. The doctor once told me that I am lucky to have moving thumbs and I would have to agree. The lack of anatomically correct hands has not prevented me from typing or moving a computer mouse. I find my own way of doing things.

I am also thankful the EEC has not had a significant negative impact on my eyesight so far, although I am starting to have difficulty with dryness. My talent for perceiving color differences remains intact.

Seasonal Challenges

Summers are difficult for me even though I can sweat. Sometimes people born with ectodermal dysplasia lack sweat glands. In my case, I am allergic to my perspiration and develop itchy rashes so taking photos for my art at that time of the year is difficult.

But the cold winters are equally as punishing because my skin dries so easily and rashes form again. I am continually using specialty moisturizers for my skin and lips.

I also have skeletal problems in my upper neck that prevent me from working but the doctors are not sure if it stems from my ectodermal dysplasia. I am in constant pain in my neck and shoulders despite formal pain management through nerve burns and steroid shots. I have to work at anything at my own pace and should be taking more breaks than what I do!

When I have the camera in my hands a new perspective forms and my pain fades away. Creativity takes over. My hands and eyes communicate with and through the camera in a symbiotic way. And when I look at the images on a computer screen, inspiration guides the computer mouse in my hands into unique forms. 

My Award-Winning Art

One of the pictures stemming from this process is “Life in a Raindrop”. It features old wooden bench boards with paint that is chipping away revealing a rough, grey core. Raindrops are forming along the edge and one large drop has already let go.

A picture of a gray piece of wood with red paint peeling off and several rain drops falling off the bottom. In the reflection of the rain drops you can see trees and sky.
This photograph, Life in a Raindrop, has won several awards.

Inside the raindrops are reflections of a sunset complete with trees and clouds. But, you have to look very closely to see this display, just as you would need to look past my physical differences to see my true nature. There is beauty beyond the gnarled, surface scars when you take the time to look within the character.

I entered “Life in a Raindrop” in a local contest and won best of show. Not too long after that, someone posted information on the NFED Facebook page about a contest featuring artwork from those affected by rare diseases/syndromes such as EEC. The EveryLife Foundation for Rare Diseases annually sponsors this contest as a highlight to the annual Rare Disease Week on Capitol Hill. People come from all over the country to meet with their legislators and representatives to enlighten them about the challenges they face on a daily basis.

Elizabeth Hoverman is standing next to a poster on an easel of her award winning photograph, Life In a Raindrop.
My photograph was chosen as a winner in the adult digital/photography category of the 2019 Rare Artist Contest sponsored by the EveryLife Foundation for Rare Diseases.

My winning streak with “Life in a Raindrop” continued and I was one of the winners in the adult digital art category. My family and I would receive a small stipend to appear at a reception capping off Rare Disease Week at the Senate Hart Building the last week of February. Each of the winners had an opportunity to present their story briefly and to mingle with other winners and the judges. I found out that my entry achieved the Judges’ Choice award.

Guests at the Rare Artist reception commented on my art.

Winning art from the contest will hang at the EveryLife Foundation’s national headquarters in Washington D.C. and may travel to other national/international events to raise awareness and encourage conversations benefiting those affected. 

See me, Not EEC

My experience with the contest was amazing. It made me go out of my comfort zone and speak in front of an audience that I would not normally have the opportunity to speak with. The speech and trip was another small step toward my goal of becoming an internationally known artist. 

Elizabeth stands at a podium speaking. Award winning art is on easels next to the podium.
I got to speak about my art and about EEC syndrome at the Rare Art reception.

The opening paragraphs of this piece were taken from the speech I gave that evening. I hope my readers get the sense that those of us affected by a rare syndrome or disease need not be characterized solely by their disability but rather by their inner character. See beyond the surface and be defined by our achievements, not the setbacks or disabilities.

Share Your Story

Elizabeth Hoverman is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Findlay, Ohio. You can view more of her art at https://www.ehcreativephotography.com/Personal-Photography-

4 comments on “Life in a Raindrop”

  1. 1
    David Cory on March 12, 2020

    Really great article and I see why they picked that picture as the contest winner!

    Confidence is an aura that extends itself beyond any Ectodermal Dysplasia diagnosis. It’s clear you are confident in your artistic abilities and it’s even more apparent that ED is just a single spinning cog in the giant wheel that is your life.

    1. 2
      Jodi Edgar Reinhardt on March 12, 2020

      That’s a beautiful way to put it, David! ~ Jodi, NFED, Director, Marketing and Communications

  2. 3
    Julie Claeys on March 12, 2020

    Your story is truly remarkable Elizabeth. Your gallery of photos are beautiful to view. Congratulations on the top award and representing rare conditions. You are a true gift.

    1. 4
      Jodi Edgar Reinhardt on March 12, 2020

      We couldn’t agree more, Julie! ~ Jodi, NFED, Director, Marketing and Communications

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