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Coping with ED

Being diagnosed and learning to live with a genetic condition can cause social and emotional stress. It often requires a great deal of adjustment to outlook and lifestyle. An adult who has been diagnosed with an Ectodermal Dysplasia syndrome may feel angry or afraid; they may have concerns regarding future generations inheriting the condition and the impact this may have on relationships and careers.

The parents and siblings of a child diagnosed with an Ectodermal Dysplasia syndrome may feel sadness, anger, guilt, etc., and a sibling may even feel jealous of the extra attention their sibling is given. However, inheritance patterns follow a course of nature and an Ectodermal Dysplasia syndrome is not caused by anything the parents did or didn’t do. Parents may be concerned about the genetic implications for siblings or have questions about the risk to future children.


This depends on the specific type of Ectodermal Dysplasia a person has. Even within each type, people can be affected differently depending on the combination of symptoms they have. Physical appearance varies from person to person, including within a family, and from family to family. Individuals affected by the most common type of Ectodermal Dysplasia, Hypohidrotic Ectodermal Dysplasia, often have a very similar facial appearance with fine and sparse platinum blond hair, very little body hair, sometimes no eyelashes and in many cases no eyebrows. There is often increased pigmentation around the eyes or on the elbows, palms and soles. The heavily pigmented skin around the eyes is wrinkled and that on the palms and soles may be thick.

We are super proud of Hannah Harpin, who we have know since she was 6 years old, for opening up about her Ectodermal Dysplasia (Haywells syndrome) in a You Tube documentary.

“AN 18-YEAR-OLD who was bullied over her rare genetic condition – that severely affects her appearance – has silenced her critics by embracing her disorder on social media”

After facing many struggles throughout her school years, Hannah is now in college and has been offered a job mentoring disabled college students.  Keep up the good work Hannah, you are smashing it.

You can follow more of Hannah’s story on her Instagram page: https://www.instagram.com/hannahharpin/

“Teenager who is deaf and bald fulfils her dream of signing with a modelling agency after overcoming suicidal thoughts triggered by years of bullying” – Daily Mail April 2021

Emotional well-being

Due to the sometimes-unusual appearance, problems with asthma, eczema, unusual teeth and/or hair, and lack of temperature control, a child may be teased or bullied at times during childhood and adolescence. It is important to maintain a child’s confidence and the school can help tremendously by being aware of their needs. Psychological intervention can be very helpful for specific problems.

Relationships outside the family

There will be times when you have a lot of appointments with various people who are all there to help. It is essential to have a good relationship with your Doctors and Dentist as this will benefit everyone. Ectodermal Dysplasia is very rare, and it is therefore important to remember that the professionals you see may have very little experience of Ectodermal Dysplasia and will appreciate all the help and information you can provide.

For both children and adults, appropriate medical care, accurate information and social support are key to living with the condition. Genetic counselling may also be helpful in understanding Ectodermal Dysplasia and the potential impact on future generations.

If you have any questions regarding coping with Ectodermal Dysplasia, please contact us by telephone 01242 261332 or email us.

For more information, you may like to download our Living with ED leaflet

or our Neonates and Infants with an Ectodermal Dysplasia Syndrome.