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I love getting questions from readers and this one came at a perfect time in light of some new research that just came out. It sounds, given my answer, that I disagree with the research, but in fact I don't. Genes do play a role in how CF manifests itself in our lives, it does not however play the only role. She also asked about IVF and the role, if any, that PGD played in our decision.
Can I ask ? Is there certain Cf genes that are more sever than others or does it make any difference ? How old were u when ur parents told u that u had Cf I don't know when I should approach that with eoin he is 6. Also congrats on your 13 wk scan all looks great did u guys do ivf with pgd ?
My Response:
You know they do classify genes into one of five classes. The classes are often just a representation of how well our cell is functioning. For instance, class 1 has little to no cell function where class 5 has very close to normal cell function. My mutation DDF508 (the most common mutation in the CF community) is considered a class 2. It's important to remember that despite our “class” of gene we have a lot of control in how CF is presented in our lives. I've met people with my mutation that were very sick early on and I've met people with my mutation that are in their 60s. So to make a long story short, it's not about what gene mutation we have, it's about what we do to take care of ourselves.
I don't know how old I was when my mom first discussed CF with me, but I know I was very young. She presented it like this: some people have brown hair, some people wear glasses, some people are in wheelchairs, some people can jump high, and some people have cystic fibrosis. She made it very clear that I was a normal kid who happened to have CF and I was treated as such.
You know they do classify genes into one of five classes. The classes are often just a representation of how well our cell is functioning. For instance, class 1 has little to no cell function where class 5 has very close to normal cell function. My mutation DDF508 (the most common mutation in the CF community) is considered a class 2. It's important to remember that despite our “class” of gene we have a lot of control in how CF is presented in our lives. I've met people with my mutation that were very sick early on and I've met people with my mutation that are in their 60s. So to make a long story short, it's not about what gene mutation we have, it's about what we do to take care of ourselves.
I don't know how old I was when my mom first discussed CF with me, but I know I was very young. She presented it like this: some people have brown hair, some people wear glasses, some people are in wheelchairs, some people can jump high, and some people have cystic fibrosis. She made it very clear that I was a normal kid who happened to have CF and I was treated as such.
We did IVF but not PGD. Mandi had the CF screen for all 1600 mutations before we did IVF. Mandi is not a carrier of the CF mutation, so we went ahead with starting a family. If she did in fact carry the CF gene, we would have created our family through other means like adoption/fostering.
So good to hear that your boys are doing well! Just keep them faithful with their treatments and as active as possible and chances are they will have a very normal life.
**If you ever have a particular question you'd like to shoot my way, please feel free to email me at ronnie@cysticlife.org or find me on CysticLife!
