New parents hold their infant son who is affected by HED.

No one expects their child to be diagnosed with a rare disorder. It’s an enormously stressful time. Coping is an ongoing process and there is no right or wrong way to manage this time of your life.

You’ll likely have these questions when you or your child is diagnosed with ectodermal dysplasia. How do we cope with this? Why did this happen to me/our child? What can I expect for our child? How do we tell our family and friends? Our other children? What about the future? The NFED families and staff are here to help answer your questions and support you and your family throughout this difficult time.

I thank God for all their (NFED’s) love and support. Don’t know what we would have done without them.–Nancy

Common Reactions

You’ll go through a range of emotional experiences when you or your loved one has been diagnosed with ectodermal dysplasia:

  • You’re shocked by the diagnosis.
  • You’re grieving the loss of a healthy child.
  • You’re mourning the loss of dreams and the future of your family.
  • You may feel angry that this has happened.
  • You may feel guilt.
  • You may have feelings of isolation and a loss of control.

All of this is normal and natural when faced with a stressful situation. There will be days when you feel that the world is against you and you want to bury your head in the covers. We understand that. The important thing is that you lift your head up and keep going. The more you educate yourself and reach out to family, the NFED and others for support, the more it will help you slowly achieve acceptance.

It often helps to acknowledge these worries and concerns, as keeping them hidden contributes to guilt and anger. You’re not the only one who feels this way. Once you admit your fears, you might feel more comfortable reaching out to our community for support. There may even come a time, believe it or not, that you will support others. At the NFED, we’re firm believers of supporting one another.

There are a number of different strategies you can use to help yourself and your family through this difficult time. Everyone has different thoughts, reactions and coping mechanisms. Try to help and provide support to each other, as well as the couple as a unit. Discovering what strategy works for you is part of the coping process. You may have to try a few before you find the one that works best for you.

Dealing with Guilt

Almost all parents will, at some point in time, have feelings of guilt because their child is not “perfect.” At these times, remember that there is nothing you did or didn’t do that could have prevented your child from having ectodermal dysplasia. Nor is there anything you did or didn’t do to cause your child to have ectodermal dysplasia. Ectodermal dysplasias are genetic disorders which can be inherited. This means you may carry a gene which can produce this condition. You did not have any choice or power over giving the gene for ectodermal dysplasia, just as you had no choice about any of the other thousands of genes your child inherited from you.

If you find that feeling guilty is preventing you from dealing effectively with your child or from moving forward, you might consider seeking professional help. Parents are not the only people who have these feelings. Grandparents, healthy brothers and sisters, aunts and uncles and others could share these feelings. Sometimes, even the affected person feels somehow responsible for his/her disorder. You may find that simply discussing these feelings with your family can do a great deal to alleviate them. Read more tips to help you cope.

Who to Tell

The decision to share your diagnosis with different people in your life is personal. You may find it difficult to talk with some people more than others. Or, you may not be sure of what to say or how to say it. We advocate for open communication as there is no shame in you or your loved one being affected by ectodermal dysplasia.

Your Family

Many people start by sharing the diagnosis with their family. However, there is no one-size-fits-all family. Your family is the group of people who are important to you. They might be related to you biologically, legally (through adoption or marriage), or emotionally (through affection, dependence, obligation, or cooperation). Family can include relatives such as siblings, parents, aunts, uncles, cousins, and even close friends. Ectodermal dysplasias are genetic conditions that run in families. Sharing the information with biological family members can be important as they may carry the gene, too. Visit Genes in Life for great tips on how to talk to your family.

Your Children

The earlier you speak to your child with ectodermal dysplasia, the better. Each family will have different ways of dealing with the issues involved. Each child is also unique in his/her need to know and ability to understand. What is common to all families and children is the necessity for honesty.
Very early on, it is you who will have to deal with the community response to your child. As your son or daughter gets older, he/she will be the one who copes with the outside world. The earlier you begin to deal with ectodermal dysplasia in a straightforward manner, the better equipped your affected child will be to handle the problems that come with being “different”. The same is true for other family members.

Ask for Help

Anticipate what your needs might be and ask people for help ahead of time. This can reduce some of the stress and give you more time to focus on your dental and medical needs. It will also give the people in your life a productive and useful way to show their support. You may have someone – a family member or friend – who is willing to coordinate offers of help, such as transportation, errands, meals, lawn care, or child care (if needed).