They dissed him. Called him names. Made fun of his appearance.

Their voices rang in his ears every day. Voices filled with ridicule and hate.

And for what reason? Simply because he was affected by a rare disorder. Because he looked different than them.

Cyprian Katongo, Jr., 32, lived that pain in his home country of Zambia when he was growing up. In his culture, he says there is little understanding or compassion if you are affected by something like hypohidrotic ectodermal dysplasia (HED) like he is.

Cyprian as a child.

Peers were quick to comment on his teeth which were shaped different. They taunted him for needing to find ways to cool down since he has the inability to sweat.

For many years, their bullying shook him to his core. He couldn’t get their voices out of his head. They took him to a dark place in his life.

He just wanted to be accepted.

Choosing Differently

One day, Cyprian decided he wanted to live differently. He chose to listen to different voices in his life…those of his family and a few close people: Prof. Cyprian Katongo, Miriam Katongo, Linda Katongo, Maggie Katongo, Mrs. Idara Udouh, the rest of RDARF family, Randolph Gordon Wightman and James Brian Wightman.

He discovered the National Foundation for Ectodermal Dysplasias (NFED) online and it, too, became a bright light in his life. Here were people who understood him.

A creative writer and designer, Cyprian shared his story and positive attitude through blogs on the NFED and posts to our HED Facebook group. His refusal to focus on the sadness in his life and instead choose positivity has inspired our ectodermal dysplasias community time and again.

Using His Voice

Cyprian enjoys designing inspirational messages and posting them to his social media.

Now, Cyprian is passionate about using his voice to raise awareness of ectodermal dysplasias and create understanding in his community, his country, and throughout Africa. It’s not easy to change a culture. But, Cyprian is committed.

He’s known for saying…

Look beyond HED and see HeD: happiness, excellence and determination.

– Cyprian

He recently was accepted to the University of Zambia, (UNZA), where he plans to earn his degree in media and journalism. A recent graduate of the YALI program, he is also a member of YouthLead, impacting his community and the rest of the world. Cyprian is dreaming big and encourages everyone to do the same.

It can take hard work but Cyprian is used to that.

There is no other way through. [It takes] hard work, see. I’m used to such. It’s a benefit of having ectodermal dysplasia, endurance through challenges.

– Cyprian

Cyprian’s heartfelt messages reach across the globe to our families. He speaks to others who may be living in the pain he once endured. He’s a powerful voice for those with ectodermal dysplasia.

The NFED’s mission is to empower and connect individuals like Cyprian. We encourage them to be confident in who they are and to not be defined by a condition they have.

The NFED supports Cyprian and thousands like him to put their VOICES in Action and use them to drive positive change. We can’t wait to see where Cyprian’s passionate advocacy takes him.


Cyprian is a great example of one of the many faces of ectodermal dysplasias – and one of our VOICES in Action. The NFED’s mission extends to families in Africa and 80+ countries. You can support our efforts to help them find and use their voice, like Cyprian. Will you give a gift of change for our VOICES campaign?

Make a Gift of Change


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