While you can’t personally re-grow the hair on your child’s head (and we know you would if you could!) there’s much you CAN do to ease the strain, understand and support your child and yourself.
Nobody ever thinks about the possibility of hair loss as part of their child’s (or their own) life. But once it becomes a part of yours, whether from chemotherapy or from a hair loss disease like Alopecia Areata, your child is going to need your help…and you are going to need help, too. And, according to the National Alopecia Areata Foundation (NAAF), the older the child, the more help and understanding your child will need. “As parents, we felt powerless. We could not grow hair on our child’s head and we could not discover new drugs that would provide effective treatment. We could, however, raise money that would fund research that hopefully, one day would do both of those things,” explained Wendy & Brian Ter Haar, parents of a grown child who suffered Alopecia Areata from a young age. The NAAF advises on ways to become an advocate for your child and other hair loss sufferers by reaching out to lawmakers and your community, educating your child’s school about hair loss, and especially diseases like Alopecia Areata along with tips for supporting your child.
While many organizations exist, you can create awareness and fundraise on your own for any hair loss reason, as high-schooler Tessa Romack did In January, 2009, when she organized a head-shaving event at her school. After 70 shaves for $5 each and the sale of $2 NAAF bracelets, she raised over $2,000 for the NAAF and you can be sure that everyone at her school understood why she walked around bald!
Become an advocate for children’s hair loss issues
Many hair loss charities and organizations are available to support your hair loss issues. One of the biggest is The National Alopecia Areata Foundation (NAAF) which raises money to support research to find a cure as well as new treatments for Alopecia Areata. Its additional mission is to support sufferers and raise public awareness and understanding of this unpredictable, devastating hair loss disease. NAAF can help you get involved with fundraising, provide information for sufferers and the public and advocate for the concerns of those afflicted with Alopecia Areata. The NAAF also creates and distributes educational materials used by doctors, schools and other health professionals, which you can access for free. Anyone can fundraise for the NAAF, and most other hair loss charities and associations, and two of its most popular benefits include a Tortoise & Hair 5K & 1 Mile Run/Walk and the “Links for Locks” golf tournament which have both provided great results both financially and emotionally.
According to the NAAF, one of the best things you can do is get involved and find ways to educate others about the issues affecting your child. And the first step is to educate yourself about the hair loss issue that’ important to you.
Reach out to business leaders, health care providers, educators, civic organizations, and religious groups who share your interest and band together to find strength in numbers.
Join local, state or regional coalitions focused on your topic and get on their mail or email list.
Write letters to the editor. Check your local papers to see if they have covered your issue of interest. Let them know if you are organizing an event.
Attend public meetings, conferences, or “town hall” meetings held legislators. Speak out during the public discussion portion of any town meeting that affects your issue. Ask questions. Voice concerns.
Get involved with your legislators. Is there an upcoming bill that affects your issue or concern? Be ready to discuss your concerns, ideas or opinions.
Give a donation or organize fundraisers to support your organization or its advocacy program.
Vote in all elections. If any candidates represent your interests, consider joining the campaign.
Educate your child’s school
If your child is suffering from a hair loss condition, no matter what the cause, it becomes important that the other people in your child’s life understand what your child is going through, too. It’s important that the kids and teachers understand that your child’s hair loss is not contagious and that it will not in itself limit your child from doing all of the activities that other children do. “When challenges are presented, it can be discouraging when resources are not readily available. The purpose of the NAAF School Packet (http://www.naaf.org/temp/pdf/schoolpacket.pdf ) is to provide useful information to help both teachers and parents, as it offers ideas about lesson plans, books to read, as well as feedback and insight from other teachers and parents,” says Lisa Butler, Director of Support, Public & Government Affairs for the National Alopecia Areata Foundation. NAAF has created a free Children’s Video that is intended for use in the home as well as the classroom. In addition most schools currently prohibit the wearing of hats within the classroom and many have adopted a school-wide “no-hat” policy. But if your child wants to wear a hat, you can apply for an exception through the US Equal Employment Opportunity Commission under the Individuals with Disabilities Act (IDEA) by following the instruction sin the NAAF School Packet.
You might also consider providing a “Crazy Cap Day” through the Children’s Alopecia Project or “CAP” at your school. On a specified day, everyone who wants to wear a hat pays $1 to raise awareness and funds.
HELP YOUR CHILD SUFFERING FROM HAIR LOSS FEEL BETTER
According to the NAAF, little ones under five years of age are generally not as affected by hair loss – it’s we adults who have to answer the questions and deal with our own feelings of pity, sorrow, guilt, or embarrassment. Once children are in Kindergarten and the primary grades of elementary school, they may be faced with curious comments or teasing which you need to be aware of. By third grade and into the teen years children become highly focused on their appearance as well as others’ appearance which reaches its height during teen years and can be very painful. Pediatric dermatologist Nancy Easterly suggests ways to help children deal with their feelings about their hair loss:
Tell your child that it’s OK to feel bad, to cry.
Teach your kids that all kids (and adults, too!) have problems to cope with – some you can see like hair loss or skin diseases and some that you cannot see like learning disabilities. These things you overcome make you a stronger, more caring adult.
Explain why your child is losing their hair in the simplest terms possible depending on his/her age whether it is from medication and infection or a disease like Alopecia areata.
Find local support groups for children with hair loss issues and join up for groups and activities.
Consult your child about choices when problems and feelings arise and help them follow through on appropriate actions.
Encourage your child to take up activities they excel at and enjoy – things that make them forget about their hair.
Listen to how your child is thinking and feeling about him or herself every day.