There isn't much you can do to explain to young children what porphyria is. All they understand is that Mom (or Dad) is sick. As far as the children are concerned, it might as well be cancer. I remember when my Dad sat me and my sister down and tried to explain it to us. This was 30 years ago, and the outlook wasn't good. Dad was upset, we were upset, and Mom was sick. All I can remember was feeling was like I was about to lose my Mom.
From that day on, I felt like I was walking on eggshells. There was nothing I could do to help her, except try to be quiet and stay out of the way when Mom wasn't feeling good. My sister was 4 years younger and she didn't understand why Mom needed to take a nap in the middle of the day. We were blessed with family close by who tried to take up the slack when Mom wasn't up to it. If you have porphyria and young children, the one piece of advice I can give you is to try and stay close to your extended family. Having someone else around your kids can go to when you aren't available is crucial to ensure that "safe" feeling kids need.
Since children can inherit porphyria they often go around feeling something bad is about to happen to them. Try to explain that porphyria isn't a big, bad monster waiting to pounce on them. Testing might be one way to put the entire issue to rest. For more info on testing see this link: http://www.cpf-inc.ca/g_child.htm
One site for children to chat and read about those who have porphyria is The Playground. http://www.geocities.com/SoHo/Museum/637...
Children Living with Inherited Diseases is another good place to start researching. http://www.stepstn.com/cgi-win/nord.exe?... CLIMB is another http://www.CLIMB.org.uk
Also, children of Gulf War Veterans should be checked for porphyria. For more info on this click here: http://www.mcsrr.org/pressreleases/prgws...
I apologize for the shortness of this month's article. May is a crazy month for people with school-age children! At least the school year is almost over!
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