snoopy and woodstock thanksgiving

Here in the United States, Thanksgiving is the time of year where we traditionally reflect on our lives and consider all that we are grateful for. Being able to appreciate what you have is a valuable skill. In a New York Times article, John Tierny states that the positive attitude that comes from cultivating an “attitude of gratitude” has been linked to better health, more restful slumber, and kinder behavior, among other things.

Ectodermal dysplasias can bring a host of “problems” into one’s life. Challenges range from seemingly minor inconveniences, like dry skin and brittle hair to more serious issues like dental work and surgery to even more severe situations like infections or organ malfunctions. There is plenty to complain about and feel shorted on. It’s easy to take on the role of victim if you’re so inclined. However, I’ve found that the majority of people with ectodermal dysplasias that I’ve met aren’t likely to complain about it. Sure, we share stories of some of the crazy things we’ve gone through, but it is in a spirit of sharing and helping each other out. As I heard said in a TED talk recently, gratitude replaces victimhood with joy. When you take time to consider your blessings and all of the things you are grateful for, it becomes harder and harder to feel sorry for yourself.

When we try to pick out anything by itself, we find it hitched to everything else in the Universe.   – John Muir

This is one of my favorite quotes because it reminds me that everything is connected. Once you start looking at the things in life you are grateful for, it is like pulling on a thread from a sweater. One thing leads to another, and you begin to see that everything has led you to where you are now. Even though some of those experiences may have been unpleasant, it is through the difficulties of life that we become stronger.

While I can only speak for myself, I can say that I am grateful for many things in my life. I am grateful for the loving and nurturing family I was born into. I’m grateful that I’ve had access to skilled doctors and medical facilities throughout my life. I am grateful to have found a partner who is understanding and supportive. I am grateful to the NFED for providing opportunities for so many people to connect. Whether it be at a family conference, on Facebook or through a simple phone call, the lives of countless people have been positively affected because of the NFED. I am grateful to all of the staff and volunteers who work so hard to keep it all going. I am so grateful for opportunity to volunteer with the NFED and for all of the friends I have met through doing so. I can even say that I am grateful to have EEC, because it has made me unique, it has made me stronger and it has given me a special bond with the handful of other people who have ECC too.

Do you want to know more about how to cultivate a grateful attitude? Have a look at the links below for inspiration.

Keep a Gratitude Journal

Fostering Gratitude in Kids

Three Keys of Gratitude to Unlock a Happy Life (Jane Ransom TED Talk)

Gratitude and Happiness (Louie Schwartzberg TED Talk)

Happy Thanksgiving! May your sources of gratitude be limitless.

Celebrate Family Health History Day!

Ten years ago, the U.S. Surgeon General declared Thanksgiving Family Health History Day.  Family history is important for everyone: it is one of the strongest factors influencing risk for heart disease, stroke, diabetes, and cancer. Understanding the risks can enable you to take specific steps to reduce your chances of developing these conditions.

For families with rare conditions, the importance of family history cannot be overstated.  For example, sometimes families mistakenly believe that their child is the only one in the family affected by hypohidrotic ectodermal dysplasia (HED). But when discussing family history, they may learn of another affected family member in a distant branch of the family. Now that a clinical trial is in place for a potential treatment, it is more important than ever for families to talk. We don’t want a distant cousin to miss out on the clinical trial because her son wasn’t diagnosed until he was too old to participate!

Here are two family history resources that you might find helpful:

National Family Health History Day is a great opportunity to draw attention to the importance of sharing family health history.  We encourage you to talk to your family and share resources such as the NFED!

Something Exciting is Happening at

Receiving more than 6,000 visitors every month, we know that is a critical, go-to resource for NFED families, professionals, researchers, and individuals affected by ectodermal dysplasias around the world. It is often the first place that new families enter the NFED, desperately looking for information and help.


We consider it the NFED front door.  Our current site offers an abundance of treatment and management information, provides powerful stories about individuals in our community, and serves as the communication platform for all of our events.

However, if you’ve been to recently, you’ve likely noticed that our web site is in desperate need of an update. Trying to find the information you need quickly is no easy task with our current layout, and its management for our staff is equally challenging. And yet, we have many valuable resources ready to share with you online.

Which is exactly why we’re so excited to announce that we will be revamping in 2015 to better serve you and your family!

We’re striving to create a web site that is modern and easy-to-use. Of course, we will continue to meet our visitors’ information needs and to share our family’s stories. But we also want to help visitors to connect with the NFED community—either through social media, our blog, or email. And, finally, we want to give visitors a reason to come back to again and again to see the most up-to-date content (including videos!), news and events.

But none of this will be possible without your help!

We’re reaching out to all of you, our generous members, and asking that you consider making a contribution to this exciting new venture. We are thrilled to develop a web site that is as dynamic and impactful as our community, but in order to create a truly useful product that will help you, we must commit ourselves financially.

Please join in the excitement and help us reach our goal of $60,000 with a financial gift that is appropriate for you. Simply visit our web site or call us directly at 618-566-2020 to make a direct donation. We can do this together!

Thank you in advance for your kindness and generosity!

Keegan’s Denture Adventure – Part I

By Lindsey James

Keegan's First Smile

Keegan’s First Smile

My first year of motherhood was filled with many exciting “firsts”- Keegan’s first smile, the first time he rolled over, first foods, first words, first steps and so on. I embraced every milestone with great enthusiasm and anxiously awaited the next.

Despite numerous health and feeding issues due to aspiration (choking on liquids), Keegan was right on track developmentally – progressing just as the books said he would.

He was about nine months old when I first expressed concern about his lack of teeth. Our pediatrician assured me there was nothing to worry about. I focused on finding answers to his other issues.

Keegan continued to grow, as did our team of doctors. All of them noticed his lack of teeth but again assured me it was nothing to worry about.

He was 17 months old when he finally started teething…or so I thought. What other explanation could there be to my little ray of sunshine being grumpy and unexplainably crabby for an entire day? I don’t remember if we had any plans that day, but I do remember being relieved it was a Saturday so that I could be at home with my miserable, grumpy baby.

Enjoying a popsicle

Enjoying a popsicle

He would burst out in tears for no reason, acting as though something hurt. He was not interested in eating anything but popsicles, he didn’t want to wear clothes, and was a drooly mess. I didn’t mind one bit as I was sure he was FINALLY teething.

Perhaps all of his teeth are coming in at once! No wonder he’s so miserable.

I kept sticking my finger in his mouth to rub his gums, hoping to feel something sharp.


Like every milestone before, I took plenty of photos.

This may be the last day my baby is toothless.

The next day, he was back to his little happy self and hadn’t woken up with a mouth full of teeth.

Being fully aware that teething can last several days, even months, I prepared myself for many more crabby days, but it was actually a year and a half later that Keegan started teething for real.

He was nearly 3 years old when his first tooth came in… and he didn’t fuss a bit.

He simply came to me and said “I feel something sharp in my mouth.”  He opened wide and, sure enough, there was a little white “point” peeping out his upper gum.

081310 Keegan Smile

By this time, Keegan had already been diagnosed with hypohidrotic ectodermal dysplasia and I had enrolled at one of the NFED’s Dental Treatment Centers. Keegan was two years old when we had our first consultation at the University of Iowa College of Dentistry. During the visit, Dr. Stanford, who is very experienced in treating patients with ectodermal dysplasia, explained that he feels children who have been potty trained have reached a level of maturity and comprehension necessary for a successful denture experience. I admit, I was incredibly disappointed that we would have to wait, but Dr. Stanford was right. And for us, waiting until the age of 3 was definitely the right choice.

By May of 2011, Keegan’s first tooth had come in. He was fully potty trained and he was more than ready to “get his teeth.”


Four Days of Normalcy

Rachel Dahler

Rachel Dahler

By Rachel Dahler

Every summer during the third week of July, the NFED hosts a National Family Conference. This has always been my favorite time of year. I went to my first Conference in 1995 when I was six and have been to 15 since.

I can remember when I was younger, printing out countdown charts and crossing off each day that passed. One year, I even made a chart in August for the next year’s Conference. Needless to say I was excited. But why was I so excited for the conference?

Four days of normalcy.

The world is rough out there. People are cruel. They don’t think about their actions, and in turn, the following consequences.

Kids are the worst. Kids are relentless and oblivious to how hurtful they’re being. Overall, the moral of the story is that the public is rude and insensitive.

Growing up, and sadly still, the public is a constant reminder we’re different. We look different, we do things differently and we require special attention. The public just isn’t accepting of anything but “normal.”


Rachel (far right in back) with friends at the 2002 Family Conference.


Rachel (far right) with friends at the 2014 Family Conference.

Yet for those four days in July, the public gets shut out (for the most part) and we build our own little “fantasy land of normal.” For those four days; there is no staring, there are no rude questions or comments, and best of all, there is no judgment. Everyone is in the same situation and we are all familiar with each other’s differences.

It is our “normal” and it’s absolutely priceless.

Not having been to a Conference more than twice since 2006, and neither of those times having been with my family, this year was extra special. My parents and my little brother, Ryan, came to the conference with me and everything felt just like it had back when I was little. All the same excitement and acceptance was still there.

It was like we never missed a beat. Old friends and new, it was just perfect.

If you and/or your family have never been to a National Family Conference, I urge you to come at least once. I’m only asking for you to give it one chance because I know for a fact – no one can ever just come once. They offer such a sense of community and acceptance.

The conferences are addicting. Whether you’ve never met another person with ectodermal dysplasia in your life, or you’ve met hundreds, we are a family. A community. A support system.

We need you like you need us. Without each and every one of you, we are nothing. I promise you with all my heart, you will not regret being a part of a National Family Conference, a family reunion if you will.