EB Community Message Forum - How to Deal with the Stares and Comments

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Dec 24, 2009, 3:18pm

EB Community Message Forum :: EB Health and Care :: General EB Q&A :: How to Deal with the Stares and Comments

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Topic: How to Deal with the Stares and Comments (Read 173 times)

Cristina
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How to Deal with the Stares and Comments
« Thread Started on Mar 21, 2007, 9:44am »

How to Deal with the Stares and Comments

Below are a few basic tips and suggestions on how to handle those people who may stare out of curiosity or ignorance and how to deal with those who may be especially rude.

Things to Remember:

First of all, remember to stay calm, creating a scene does not help the situation no matter how tempting it may be. It can become extremely emotional some days especially when you encounter a particularly rude person. If you're an EB parent/caregiver it also important to stay calm in front of your child so they do not associate the staring with so much stress and anxiety and will be better able to handle it on their own when they get older.

Remember these are your opportunities to spread EB awareness. More times than not people are simply curious or perhaps even afraid of the unknown.

Children are often more understanding than adults and it is a good opportunity to teach them that being different is not bad and that everyone is special in their own way.

Tips and Suggestions:

Make up note card that explain EB. Include basic information including the fact that EB is a genetic condition and NOT contagious, as many people are afraid that it is. Also include the fact that there is no cure, as many people don't understand why EB can not be cleared up by a simple cream or pill. You can also personalize it to you or your child's form of EB and include links to EB related websites so they can choose to learn more.
If you meet someone new or notice someone staring the note cards are great to hand out. They're quick and easy so if you don't have time to stay and explain EB in person the note cards can speak for you and direct them to further resources.
Encourage them to pass the cards onto a friend. Hopefully the card will keep getting passed on and spread even more awareness. You can even add on the card something like "Pass it on, pass this card onto a friend and help spread EB awareness"

For children in school or new group situations, it's extremely helpful to explain to the child's class about EB at the beginning of the year. Remember to explain in words that the children can understand and adjust according to the age group. You can choose to have a parent/caregiver give the talk or the teacher or principal. As the child gets older they can choose to give the talks themselves. Remember to include things about the child unrelated to EB such as their favorite TV shows, toys, hobbies etc. This helps the other children relate to them and understand that having EB doesn't make them any different. At the end of the talk ask the children if they have any questions as many times they do.

What to Say:

I will be compiling a list soon of suggested things to say to adults and children when explaining EB and what to include on your note cards.

Please feel free to add your suggestions, comments, personal stories and questions regarding this topic.

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