‘Tis the Season – For Respiratory Illnesses

By Clayton Butcher, M.D. As an internal medicine and pediatric physician, I personally over the last two to four weeks have seen a significant increase in respiratory illnesses. They range from from viral upper respiratory infections, pneumonia, and good old fashion influenza. This season seems to be particularly severe. Many of our viruses including respiratory…

Post Traumatic Growth

A positive result can come out of experiencing trauma or difficulty and working through the resulting emotions. This is called post traumatic growth, or PTG. Learn how this applies to ectodermal dysplasia and how you can nurture it.

Tips for Finding a Doctor or Dentist

When 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…

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…

Genetic Counseling Helps Make Sense of Ectodermal Dysplasia

If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it?  Should I have other family members tested? All of your questions are valid ones and normal to have following a diagnosis. The specialist best…

Information To Take to Your Doctor or Dentist

When you have a rare genetic disorder like ectodermal dysplasia, it’s possible that you will know more about your condition than a doctor or dentist. We know that it can be frustrating for you when you are the one seeking answers. With thousands of rare disorders, it’s not reasonable to assume a care provider will know…

Organizing Medical and Dental Information

It is a good idea for you to keep your medical information in a personal file. People tend to change physicians more frequently as jobs and insurances change. You may choose to enter medical or dental information in a laptop, or keep hard copies in a notebook or binder. Dating all of your entries will…

Ear Wax In Ectodermal Dysplasia

Some people affected by ectodermal dysplasias may experience abnormal wax production or accumulation. We expect this since wax glands are specialized types of sweat and skin glands. The most frequent problem is excessive accumulation of wax in the ear canal. This may result in severe itching and even hearing loss. Removing the Wax If a…

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