Telling Your Child About Their Neurofibromatosis

We frequently get asked about how to tell a child they have neurofibromatosis…or whether to tell them at all. Obviously, this is a difficult decision and an important discussion. While we recommend telling and including a child in a way that is appropriate for their age, ultimately it is up to the parents.

Consider though that most children with neurofibromatosis will begin to question why they must go to a special doctor, or why they look different from other children. Also, there is a chance that your child may begin to learn about NF1 from friends or the media instead of from the comforting source of their parents and the knowledgeable source of their doctors.

Also, children are very intuitive and most likely will recognize that something is going on. The evasiveness and secrets may create fears far greater than the truth.

Lastly, including your child in the age appropriate way from the very beginning allows them to develop the skills and knowledge to handle their disorder for their lifetime.

JG an adult with NF was not told until her teens that she had NF. Her words demonstrate the problem with not telling a child.

My parents hid the NF from me for the same reasons [as most and I had] no symptoms. When I was 14 and my parents finally told me….my world sucked and I felt betrayed and a lot of anger towards my parents. I lost valuable skills in learning how to deal with a chronic progressive condition. I lost time learning how to advocate for myself. I speak from my experience. As parents it is our decision how we manage our kid’s health and tell our kids about their health. I wish my parents had made me a part of my health care so that as a young adult I felt more connected with my condition and had stronger skills in caring for my unique needs.

It wasn’t until last month I finally applied for disability status at school to help with more money and learning aids. I may appear “normal” but I’m not. I have NF and I am almost 40 and still struggling to develop skills in advocating for myself.

The links below offer more resources on sharing with your child.

Helping your Child Cope with Neurofibromatosis – Helen Hand, PhD.

How Parents Can Help Their Child Cope with a Chronic Illness – From the Center for Effective Parenting

How Do I Talk About NF1 – From the University of Alabama

Talking with Children about Neurofibromatosis – From the Neuro Foundation, London