I Have AEC, and I Can Run

After running the Hot Chocolate 5K in 2013, and thoroughly enjoying myself, I set a goal for myself to run at least three 5K’s and a 15K before the end of 2014.  It had been years since I last ran competitively, but I’ve learned a thing or two about smashing limits in my lifetime.  As you may know, I am affected by AEC Syndrome (also known as Hay Wells Syndrome) and don’t sweat properly.  That said, I was taught to set my own limits, and not allow others to set them for me.

Race training, or running for that matter, when you don’t sweat properly can be challenging.  But, it’s not impossible.  I’ve learned to compensate for my inability to sweat properly.  I make sure I have plenty of water with me.  I keep a wet cloth or mister bottle with me on hot days or long runs, and use it to mimic the evaporative cooling process of sweat.

So, how did I do with my 2014 goal?  Let me show you…

This is after I ran the Color Run 5K in April.

after running the Color Run 5K

This is me finishing the I Love Forest Park 5K in September…

finishing the I love Forest Park 5K

This is me running the Flat as a Pancake 5K in September…

Running the Flat as a Pancake 5K

This is after I ran the Huxman Run 2 Sweat Virtual 5K on my own in October…

after running the Huxman Run 2 Sweat Virtual 5K

Here I’m crossing the finish line of the Skippo10K Trail Run in November..

crossing the finish line at the Skippo 10K Trail Run

And this is after I ran the Hot Chocolate 15K this past weekend…

2014 Hot Chocolate 15K Finish Line

Yes, you counted correctly.  I ran four 5K’s, a 10K, and a 15K, which surpasses my goal for 2014.

My goal for 2015 is to run at least one half marathon.  I just have to choose which one.

I have AEC, and I CAN run!

Keegan’s Denture Adventure – Part 2

By Lindsey James

I have always enjoyed going to the dentist. As a child, my great-aunt worked as an assistant to my dentist. Visits to Dr. Gary meant seeing Aunt Linda… and getting to pick a prize from the beloved treasure chest.

I don’t recall ever having a bad experience at Dr. Gary’s office, even when the reason for the visit wasn’t very pleasant. I definitely had my share of cavities and my baby teeth were eventually replaced by awkward peg-shaped teeth, a few of which had to be pulled prior to getting braces (which I wore for 5+ years!). Still, dentist visits were never something I feared. Keegan’s first “real” visit to the dentist, however, was something I had been anxiously awaiting and fearing at the same time.

“What if he freaks out and refuses to cooperate?”

“How am I going to keep him in the dentist’s chair?”

The only thing I could think to do was practice and prepare him for what to expect… and pray that neither of us would burst out in tears.

I ordered a copy of “Carver’s New Smile” from the National Foundation for Ectodermal Dysplasias.  We read it often, in fact I’m pretty sure we read it at least once each day for an entire month before his appointment in May 2011.  (It’s still one of his favorite bedtime stories… Carver Claeys – you are Keegan’s hero!)

Keegan brushes his tooth.

Keegan brushes his tooth.

Tooth brushing became a BIG deal, and an important part of our nightly routine. I kept reminding Keegan how special his tooth was and how we needed to take extra care of it. I would help him brush his tooth, as well as his gums, and “pretend” to examine the inside of his mouth while he sat patiently on the bathroom counter with his mouth wide open.

Keegan sits patiently in the dentist chair.

Keegan sits patiently in the dentist chair.

I don’t know if any of this really made a difference, but when the big day came my little 3-year-old sat perfectly still (well, as close to perfectly still as can be expected) with his mouth opened wide and let Dr. Stanford and Dr. Murrell examine him and apply fluoride varnish to his pointy little tooth. Quite an accomplishment for an active little boy – Proud mommy moment indeed!

When it came time for the x-ray, Keegan was starting to lose patience. I think it scared him to be left in the exam room alone with the “big camera.”  He started to get upset and cry. Unfortunately, they were only able to get two partial photographs. Both of which showed only one tooth.

The excitement that was felt with the arrival of Keegan’s first tooth was briefly replaced by disappointment that it was his only tooth. I quickly reminded myself of Keegan’s great accomplishment – sitting still for his exam – and decided that was cause for celebration.

(And what better place to celebrate than IHOP?)

We continued playing dentist at home and when we returned to Iowa City two weeks later, Keegan again achieved ROCK STAR status and sat for over 30 minutes while Dr. Stanford built-up and re-shaped his pointy tooth with a resin material.

Keegan’s smile had already been changed, but we would return in August to have impressions made for his “training denture.”

We were sent home with a Keegan-size impression tray. I stopped at a grocery store on our way out of Iowa City, and loaded up on instant mashed potatoes. We incorporated “potato training” into our nightly routine.

Keegan prepares for his mashed potatoes impressions.

Keegan prepares for his mashed potatoes impressions.

While making supper each night, I would mix up a bowl of instant potatoes; fill the denture tray and place it in Keegan’s mouth; pressing up on it as I imagined Dr. Stanford would. Of course, Keegan protested and gagged at first; but day by day, it became easier and even something that he looked forward to.

Almost in!

Almost in!

He did it!

He did it!

(of course, who doesn’t like mashed potatoes!?!?)



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 NFED.org

Receiving more than 6,000 visitors every month, we know that NFED.org 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 NFED.org 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 NFED.org 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 NFED.org 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!