Iam just learning about cf, my fiance has cf and I have questions, plz help

anonymous

New member
sorry I messed up I started this topic. I have met and fallen in love with a woman that has cf, she is 20 and has known about it since age 14. We have plans for our future, marriage kids, and so on. This disease doesnt matter to me cause I love her no matter what, but I am curious, we are going to have children latter in life. What I was wondering is what are the chances of our children haveing CF. I have never been tested for it but as far as I know Iam not a carrier, but she has it. Like I said it does not matter to me but Iam curious. Any other advice or tips about dealing with a loved one with CF would be greatly appreciated. Thank you u all for ur time and reading this.
 

anonymous

New member
If you're for sure not a carrier then your children will not have CF. They will however be carriers for the CF gene, that's gauranteed because she has CF. CF requires two genes, one from each parent to genetically inherit it. So if you only inherit one CF gene you will only be a carrier and unaffected. However, I highly reccommend you get tested and it's no gaurantee. There are over 1000 CF mutations and counting so there are cases where it's not caught. Talk to her doctor and he can refer you to a genetic counselor of some sort and they will probably do some examination of your chromosomes.
 

Purplelungs

New member
Also another thing to think of is by the time you are married and decide its time for children her health may not be able to handle baring children. There are lots of CF women who have children and did fine during and after pregnancy...and there are others who did fine through pregnancy but afterwards their health declined rapidly...and then some who didnt do good during pregnancy and didnt after. Its recommended a cf women be in good health especially lung wise before considering becoming pregnant (of course that doesnt always happen things happen). In any case its wonderful you love this girl so much and you are already planning a future together. I love when someone is so dedicated to the other.
Amanda
 

anonymous

New member
That is a very good point. Iam sure that will be a huge part if and when we consider haveing children. Are there any good websites or books that anyone can recommend to help me learn more about CF and what I should expect and how do handle certain situations? Once again thank you all for your help and guidance.
 

anonymous

New member
When I met my husband and was learning about CF, his doctor gave him a book called GROWING OLDER WITH CF-A HANDBOOK FOR ADULTS (Provided by solvay pharmaceuticals). This book was actually given to "us" at the first appointment I ever attended with him. It was give to the doc's office for free from Solvay pharmecuticals which is a drug company that supplies CF drugs. The doc asked me if I knew about CF and I said "only what he's told me", so the doc gave us the book. Very informative! I would try to ask her doctor's first, maybe see if you can go to an appointment with her. If not, contact solvay pharmaceuticals and they may be able to give it to you.

If you are interested in the fertility aspect for a female with CF, the following website is a great resource. <a target=new class=ftalternatingbarlinklarge href="http://www.geocities.com/murrensnaturemama/index.html
">http://www.geocities.com/murrensnaturemama/index.html
</a>
Other than those two things, if you find yourself feeling a little clueless and have specific questions, this is a great place to come and ask it. I know I have asked many hundreds of questions on this site about my husband's CF, medications, CF in general, fertility.....

Julie (wife to Mark 24 w/CF)
 

anonymous

New member
Thank you very much. Iam sure I will be asking tons of questions as well. I just want to learn all that I can about CF, there is nothing worse than being clueless about something that is now such a big part of my life.

Nick
 

anonymous

New member
Nick, are you the initial poster? I found the link where you can get the book I mentioned above. It is <a target=new class=ftalternatingbarlinklarge href="http://http://www.mycysticfibrosis.com/growing_older.asp">LINK </a>

That book helped answer a lot of basic questions for me. It goes a bit into the biology of CF, some of it pretty in-depth but most of it is in layman's terms so it can be understood. It is free to order it so I would recommend that you do so, it will help!


Julie (wife to Mark 24 w/CF)
 
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