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…
Summer Fun
Whew! Hot weather has arrived in the Midwest. We are enjoying a beautiful sunny day, bright sunshine and blue skies but it’s also hot and very humid. Hmmm. It might not be such a beautiful day if you or your kids don’t sweat. I remember the days when my kids would come in from outside, all hot…
Wigs
Some people are comfortable with their appearance and may find a wig unnecessary. Others choose to wear wigs to improve self-image and increase self-confidence in social situations. The decision to wear a wig is, and should be, a personal choice. A child should not be forced to wear a wig. Providing the option to wear…
Key to Best Treatment
By Margaret Bennion Involved parents in their child’s dental treatment helps the children receive the best treatment possible. There are variations of ectodermal dysplasia and they differ from child to child. Numerous health care professionals are involved in their care. Many providers and/or parents give up or get discouraged because it is too difficult and expensive….
Breast Implants
Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…