Tuesday, September 18, 2012

The Green Monster in the Family Tree

When you get that diagnosis of mitochondrial disease it it hard. You work through the tough questions in your immediate family. The medical adjustments that have to be made. Finally you face the moment you realize that you have to tell the rest of the family that there is a monster lurking in the family tree.
Mitochondrial disease is passed genetically in several different ways. This is a complicated part of the disease, so complicated many doctors we don't fully understand it. Our knowledge of how mitochondrial disease is passed from parent to child, or a spontaneous genetic problem is changing. As medical science advances medical researchers are able to give us a better more detailed look into the genetics of mitochondrial disease.
Here is the explanation of mitochondrial disease genetics by the experts:
Inheritance and Genetics
The Genetics of Mitochondrial Disease
If you or your child has been told they have mitochondrial disease it is important to find out what type of inheritance pattern the geneticist believes or knows is happening. You should also ask them who in the family needs to be told for medical reasons and what exactly you should tell them. Genetics doctors and their staff should be very adept at helping you. They are dealing with not just mito but many other genetically passed diseases everyday. It still all comes down to you having to talk to your family.
A few helpful tips to try to ease this difficult conversation:
1) Don't have this talk on a major holiday.
2) Have it when you know things are going to be quiet and calm.
3) Try to have this conversation with back up help from your wife/husband.
4) Keep it simple. Be clear and to the point. Then have your family ask questions. That way when you are done talking everyone has the information they most wanted.
5) Finally take something solid like a book, pamphlet, or a website for your family to go to later. Most family members will not ask hard or emotionally loaded questions because they don't want to hurt you. By giving them another source(s) to turn to they can read through a book, pamphlet, or website for those answers later.
This isn't an easy conversation for any family. Also with mito there is so much gray area where you won't have the answers. This at least is a starting point for you and your family.

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