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Wednesday, January 14, 2015

Not Contagious

Yesterday, Becca came home to share a story with me which I want to be able to share with everyone regarding the importance of education and knowledge. I don't know how the whole situation came about. Becca told me she was talking with a boy in her health class, something came up and they stated discussing it. He then turned around to her and said something to the affect of "what do you have your brother's disease?" I am not sure what this child intended by his comment but it was hurtful to Becca. Becca does know she is a carrier of the VRK1 mutation, however, I wanted to see what else she knew and understood. I realized that Becca does not completely understand what it means to be a carrier compared to having the disease, compared to being contagious. Ian's disease is not contagious, it is not spread from one person to another, others can not get it by being near him, touching him or kissing him. VRK1 is an autosomal recessive inheritance disease.  

So I figured if Becca did not really understand the whole thing and she lives with it as well as having had many different discussions regarding VRK1...others don't either. I am hoping a better understanding will be had by many after reading this post and perhaps parents can share with kids, so maybe, just maybe it will spare Becca from even one more child coming up to her with a comment such as "what do you have your brother's disease".

After doing some research on line, I went right to a reliable source...Dr. Julie Kaplan, a pediatric geneticists, and my wonderful cousin. I wanted a very simple or as simple a way as possible to be able to explain so here we go:

In order to discuss these types of inheritance, first some basic genetics. Genes are the blueprints that our bodies use to grow and function. Genes are carried on tiny structures called chromosomes that are found in every cell in our bodies. We have thousands of genes on 46 chromosomes, which come in pairs. The first 22 pairs are called autosomes. The 23rd pair is called the sex chromosomes. This pair determines if a child is a boy or a girl. Girls have two X chromosomes and boys have an X and a Y chromosome. For each pair of chromosomes, we receive one copy from our mother and one copy from our father.

One possible type of inheritance is autosomal recessive. In autosomal recessive conditions, both copies of the gene that causes the condition must have a change or mutation that causes them to not work correctly. Therefore, a child with a recessive condition must have inherited a non-working copy of the gene from each parent. The parents are called carriers because they have one non-working copy of the gene and one copy of the gene that works correctly. Because carriers have one working copy of the gene, they DO NOT have the condition. With each, pregnancy, there is a 25% change that both parents will pass on their non-working copy and the child will have the condition. There is a 50% chance that only one parent will pass on their non-working copy of the gene while the other parent passes on their working copy. In this case, the child will be a healthy carrier like the parents (BECCA). And, there is a 25% chance that both parents will pass on their working copies in which case the child will be healthy and will also not be a carrier.
Autosomal recessive inheritance
Take from the MDA Website

I hope this is broken down enough for everyone to understand and those with children directly related to our children are willing to sit down and explain the process to their kids...Ian's disease is not contagious. You can touch him, visit our home, touch Becca, Brian or myself and you will NOT get it. 

10 comments:

Anonymous said...

This is a wonderful explanation.
Jennifer Larsen Orlando

Anonymous said...

Amy Eisenberg Samay
I'm so sorry that Becca encountered a jerk kid.

Anonymous said...

Heather Schmidt Young
I'm sorry Becca had to hear such a hurtful comment. Educating others is a great way to get the word out. That was a great explanation

Anonymous said...

Gila Biegacz
Hugs!

Anonymous said...

Deana Munchow
I'm also really sorry that a student hurt her feelings like that. I know she works hard not to hurt the feelings of some students who are "different" (her words) in my class. Thank you for the explanation.

Anonymous said...

Mindy Hammerman Lipsey
The boys did their science fair project on autosomal recessive genes to understand how they got Stargardts.

Anonymous said...

Sallie Brovitz-Palmer
The explanation is wonderful. So sorry that happened to Becca.

Anonymous said...

Michael Kiewe
Invite the child over to see the real life if the child doesn't apologize too her then I feel sorry for that person

Anonymous said...

Gina Cohen
Kids can be so mean sometimes.

Anonymous said...

James Robbins
Kudos! Part of me can't believe that anyone needs to have this explained for them - it's the 21st Century, not the 5th ... right? Anyway well done - more power to you guys. Hoping all is OK.