Women affected by ectodermal dysplasias can experience symptoms that are specific to being female and can be sensitive to talk about. We have a new library resource that these women will find useful for vulvar and vaginal care. Vulvar refers to a woman’s external genitalia while vaginal refers to internal.

Dr. Jill Powell

If you have been with the National Foundation for Ectodermal Dysplasias (NFED) for awhile, you may remember the research survey we did about 10 years ago to learn more about Female-Specific Issues in Ectodermal Dysplasias. At the time, we really didn’t know much about these issues other than what we had heard anecdotally. Jill Powell, M.D. on our Scientific Advisory Council, conducted the survey which looked at issues such as breast development, breastfeeding, vaginal issues and pubic hair.

One thing we have learned is that affected women do experience vulvar and vaginal issues. For example, the survey found that 85 of the total group of 18 to 40-year-olds reported intercourse to be painful as well as 100% of the women who were 41 years and older. In addition, 62% reported having frequent yeast infections. You can read more about those survey results in detail.

Since that survey, Dr. Powell has led workshops at our annual Family Conferences just for women affected by ectodermal dysplasias. The women are able to ask questions, raise concerns and share their experiences in a private setting. Dr. Powell answers questions and provides information. Together, we learn.

As a result of the survey and from listening to women’s experiences, we asked Dr. Powell to write a resource for women to help them address some of these sensitive issues. Her new article, Guidelines for Vulvar Skin Care for Ectodermal Dysplasias, does a great job in providing care suggestions.

“Just as the eyes, ears, nose and throat can be affected and require special care, women with ectodermal dysplasia syndromes may benefit from use and avoidance of certain products to minimize or prevent bothersome symptoms like vulvar or vaginal irritation, itching, burning, dryness (which can lead to uncomfortable or painful sex), too little or too much vaginal discharge, or frequent yeast infections,” Dr. Powell wrote.

The article is packed with practical suggestions on how to address vulvar and vaginal issues. You will learn what laundry products to use and which ones to avoid. There are numerous suggestions on types of clothing and how they can affect vaginal issues. There is an extensive number of tips for what to do and not do when bathing. Finally, learn about the side effects of birth control.

Join Our Facebook Group for Women

If you can’t make it to a Family Conference to talk with other women, we do have a way you to have connect. We  have a private Facebook group dedicated to women affected by ectodermal dysplasias. You can join to have these personal conversations. We are vigilant about restricting membership to only the intended audience to respect our families’ privacy as much as possible even though it’s a public forum like Facebook. You will have to answer a few questions before you are approved.

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