May is CF Awareness month – welcome to becoming aware, two.

Genetics – let’s keep this simple. I have to keep it simple.

This is straight out of the CF Foundation as they have perfected the language:

“To have cystic fibrosis, a child must inherit one copy of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation from each parent. People who have only one copy of a CFTR gene mutation do not have CF. They are called “CF carriers.”

CFTR is a protein that does not work the way you would like it to.

Each time two CF carriers have a child, the chances are:

25 percent (1 in 4) the child will have CF
50 percent (1 in 2) the child will be a carrier but will not have CF
25 percent (1 in 4) the child will not be a carrier of the gene and will not have CF

People with CF can also pass copies of their CF gene mutations to their children. If someone with CF has a child with a CF carrier, the chances are:

50 percent (1 in 2) the child will be a carrier but will not have CF
50 percent (1 in 2) the child will have CF”

Here is a neat little picture and more info:
https://www.cff.org/What-is-CF/Testing/Carrier-Testing-for-Cystic-Fibrosis/

There are more than 1,700 genetic mutations of the CF gene, but not all cause CF. Current tests look for the most common disease-causing mutations, but they don’t test for every disease-causing mutation.

To sum it up:
You need two carriers (one that has CF or not) for the possibility that your child may have CF.

I would advise getting tested to see if you are carrier, because they do not test for every CF mutation and your baby may still have CF if both of you are carriers.

About 10 million Americans are carriers and are usually (but not always) from European descent. There are approx. 30,000 CFers that reside in the U.S. and 70,000 worldwide.

My take:

I knew from the age of 6 or 7 that I was not going to have children.

For me – who in the hell would want to carry this gene forward?

When I was born the life expectancy was 2-5 years old. So, I have always been quite close to the end of my life – in theory. It is almost like being born at 75 years old and knowing the life expectancy is 78 years old. You have these very select ad vital years to make the most of your life. But, then as I marched ahead so did the life expectancy, and I am so thankful for that.

Put that aside, if I was born today and knowing the life expectancy was 40 years old, even with the genetics, I may have considered having children, thinking technology and medicine will make life better for CFers, because they have and they will continue to do so.

There are times, I am not going to lie that I have seen myself as a mom. I even thought of ways of not having the child myself. But then I would cough or get an infection or my sugars would crash, or maybe the amount of preparation to take care of CF just side-lined that thought.

For me, it would not be right or fair to bring a child into this world where one, I could knowingly pass before them. And if I had a child with CF and they were in pain or their quality of life was compromised in such a way that it hurt my child, I don’t think I could live with myself. I could not live guilt free, because I knowingly walked into this – and I don’t think any child deserves that.

The buck stops here with me. I will not carry on this gene that yes – has made me who I am, but where in the years of my life I have had to learn how to walk through hate and anger and shake hands with my mortality. Where I learned by great practice that CF and I will get nowhere by fighting against one another.

Where I had to acknowledge that my body is asking for my help, not for my fueled, desperate anger.

I am actually opposed to the term CF fighter. I get it – and believe me by saying this, I could get some opposition. But I am not fighting against CF, it is not my antagonist in this story.

I agree CF sucks at times. It fucking does. It is not a nice disease, and yes, it very well could take my life. But, it isn’t my antagonist. By me hating it would be. I don’t want to hate anything, especially not something living inside of me.

I don’t see how one can live peacefully by fighting. It is exhausting, and I don’t think it is possible given the definition and the energy surrounding those words. Even the word fight makes you scowl. It changes your facial expression vs. saying amends or peace or love or laughter.

You get some place by coming up behind it, filling up that cup with goodness and happiness and letting it overflow onto the ground, and let it keep going and going with all that goodness.

Where becoming friends with CF – let me tell you that took a hell of a long time – is the number one reason I believe I am as healthy today. Moving those positive thoughts on out, or so I think.