Tips for Finding a Doctor or Dentist

figure-16When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a care provider who is willing to study and  learn about ectodermal dysplasia because they are interested in you and how to best care for you.

Here are  resources to get you started in finding a partner for your medical and dental care:

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If You Suspect Ectodermal Dysplasia

 

We know that you may have found the National Foundation for Ectodermal Dysplasias (NFED) after searching for your own or a loved one’s symptoms. If you suspect you or your loved one is affected by ectodermal dysplasia, the next step is to find a doctor who can formally diagnose you.

Find a Doctor

  • Contact us. We can provide you with a list of doctors in your area. Our list is comprised of names that families affected by ectodermal dysplasias have recommended. We do not endorse or recommend any one physician.
  • Use the National Institute of Health’s (NIH) physician locator to find a knowledgeable geneticist in your area.
  • The National Society of Genetic Counselors has a database that you can search for a counselor near you.
  • Make an appointment with a geneticist at a university hospital near you.
  • Ask your primary doctor for a referral to a geneticist.
  • Call the doctor referral service at your local hospital.
  • Consult your insurance provider for a listing of geneticists.

Volunteer Spotlight

Our office volunteers show up on short notice to fold letters from appeals to special events, to stuff and address thousands of envelopes we mail each year. They relentlessly give of their time and help wherever needed which makes a great difference for our staff.

They help with creating silent auction baskets, copying, filing, folding family conference shirts, putting first connect, awareness, and family conference packets together and so much more.

If they hadn’t been here to volunteer and make their mark, some of us would have to stay after hours to make the pressing deadlines. Thank you for being so helpful, caring, and selfless. Your actions are priceless. We appreciate you for your example and trust we don’t work you too hard.

 

An Anniversary Gift for You

As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary!   This year, we celebrate 35 years of NFED success.  Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes.

Thirty-five years ago there was not much known about ectodermal dysplasias not to mention how to manage the symptoms.  Today, genes have been identified for many of the syndromes, syndromes have been characterized and we know how to manage the various symptoms.

Our success is a result of a visionary founder, a committed and supportive NFED family (YOU!) and very dedicated staff over the years.  We have been blessed along the way with great leadership from our Board of Directors, Scientific Advisory and Patient Care Councils. We are very grateful to all of these individuals who so generously share their time and expertise with us.

Most importantly, we have only been successful because of YOU, our NFED family.  Your love and support has driven us to great strides.  It is only because of your generous donations, both in terms of money and your precious gift of time that we are standing stronger than ever after 35 years.

Your donations, whether big or small, have ignited the Research Program and fueled our Treatment and Support Programs.  Because of your generosity we have helped more than 7,500 in the U.S. and worldwide by providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families; helping individuals and families benefit from early diagnosis and care; and spearheading research to ultimately develop cures.

Your volunteer hours have helped us hold 35 National Family Conferences and numerous Regional Family Conferences.  You have spent countless hours writing content and sharing your family’s stories so others can learn from you.  You have participated in research so we can find answers to your questions.  The list goes on and on!  We are very grateful for your love and support throughout our 35 years of success.

In November, we will launch a new website as an anniversary gift to you. This website is going to be awesome!  It will be comprehensive, user-friendly, fun and happy.  You will also be able to access this website on your mobile devices and tablets.

We have been working countless hours to develop new and fresh content and to be sure this new website is designed in the best possible way. We are beyond excited to launch this new website to better serve the needs of our community.

Stay tuned.  It is coming soon!

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A Shot of Courage and Lavender Cooling Mist

 

By Liz Timmerman

Just over a year ago, my youngest daughter, Violet, was diagnosed with hypohidrotic ectodermal dysplasia at the age of one year old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t eat and couldn’t sleep.

The Timmerman Family

Liz and Will Zimmerman’s youngest daughter, Violet, is affected by ectodermal dysplasia. Big sisters are Emma and Lucy.

 

 

 

 

She had mouth surgery at six weeks old and when her first teeth emerged around 10 months old, I was certain that the surgery had caused their pointy shape. After taking her back to the pediatric dentist that performed her mouth surgery, we were given the diagnosis of ectodermal dysplasia.

Despite the kindness and compassion, our dentist showed to me, I left the dentist office crying and heartbroken. What would her future look like? And my biggest fear – would she one day be too ashamed of her different teeth to smile? How would society treat her? Would she be seen as different? Would she feel different? How much emotional and physical pain was this genetic condition going to cause her?

A friend of mine had mentioned prior to our dentist’s diagnosis that a friend of her’s daughter had the same teeth and had a condition where she couldn’t sweat. I brushed off the comment, because after all, how are teeth and sweating even related? I was still certain that the laser used in her mouth surgery and damaged her teeth.

Looking back, my friend’s comment was a small seed that was planted, allowing me to receive my daughter’s diagnosis without having to deal with shock on top of all of the other emotions. I went back to my friend a couple of days later and told her that she was right, and that Violet also had ectodermal dysplasia. So many challenges that Violet had been dealing with were starting to make sense.

My sadness was starting to give away to relief. My friend then put me in touch with the mom whose daughter also shared the same condition. After a conversation with her, I began to pick myself up and see hope again. This woman was filled with love and strength and gave me the shot of courage I needed to pull myself together and figure out a plan to help Violet.

I got in touch with the National Foundation of Ectodermal Dysplasias (NFED) and read every Facebook post and blog post that I could find. It was comforting to hear other people’s stories and to learn about their journeys. And, a year later, I feel as though Violet is now a part of a special tribe, and fortunately for her, she will always know others with the same unique challenges.

My family and I became inspired to come up with a fundraiser to help raise awareness and money for ectodermal dysplasia. This summer, I signed up to have a vendor booth at a very large Lavender Festival nearby which attracts more than 10,000 attendees over a three-day weekend in July.

I am a beekeeper and make products from the beeswax, honey and plants in my yard. My first idea was to make a violet-infused soap to sell as the fundraiser, named after of course Violet. Violets are also known for their hydrating skin properties and often ectodermal dysplasia goes hand and hand with dry skin. Unfortunately, my first batch of violet-infused soap turned out the color of puke and smelled horrible.  I could continue trying to perfect the violet soap, or move on to another idea.

Then my cousin, Violet’s Godmother, came up with the idea of having something to sell that would help cool customers down, as the festival always seems to be on the hottest day of the year.  She even went so far as to donate several hundred cobalt blue glass spritz bottles to me and at that moment, inspired by her creative generosity, I knew what our fundraiser was going to be – a lavender cooling mist.

Not only was it the perfect product to spread awareness and educate people on the rare condition, it was also the perfect purchase for a hot day at the Lavender Festival.  We sold more than 120 bottles of cooling mist infused with springs of dried lavender over the three-day festival and raised almost $700.  Violet was very proud of her cooling mist, and we use the “mister” all summer long at our house to help Violet stay cool.

Violet and ElizabethTimmerman

Liz meets Veronica who is affected by ectodermal dysplasia at the festival.

Spraybottles with sister

Violet’s big sister helps sell the indigo bottles filled with lavender cooling mist.

But the “coolest” part of the entire experience was meeting two other people affected by ectodermal dysplasia. The daughter of the woman who gave me my first pep talk after Violet’s diagnosis made a special trip to meet Violet when she heard about the fundraiser we were having.  Meeting her was like meeting a long-lost family member. It is so amazing to see the kind of person she is and to know that Violet will have a beautiful role model to help her journey forward.

As if that wasn’t enough to make the fundraiser a complete success, a customer listened to my short blurb about the fundraiser. She told me with surprise on her face that she believes she has ectodermal dysplasia but had never known there was a name for it, let alone a genetic condition.  We were both near tears by the time she left my booth.

I hope that she joins the foundation and becomes connected to others who share the condition that both she and Violet have.  Violet is only two, but as her mom, to find others that are facing the same challenges can mean the difference of feeling isolated and alone, or feeling supported and a part of a loving community.

Violet and her sisters

Emma, Lucy and Violet show their sisterly love.

This fundraiser was such a positive experience for our family. It is my hope that we find ways to continue fundraising as a family for the NFED. We want Violet to always know that because of her, we have found a cause worth working for, and because of her, we have been welcomed into a wonderful and caring community that we would have otherwise never known.

Our guest blogger is Liz Timmerman, the mother of Violet, 2, who is affected by HED. Liz and her husband, Will, live with their three daughters in Michigan.

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