Hello Sarah,
It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.
As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.
If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.
As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.
Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.
This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.
It is very tragic that your brother was not diagnosed sooner in life. I'm sorry for your loss. To answer your question "do you think it is acceptable ...." No, I do not think so -- it is my understanding that most CF genes originate from Europe - for doctors there to not think of CF when someone has repeat lung infections seems strange to me. But then, we are all hearing about later and later aged diagnosis when dealing with the more mild variant gene types.
As for your health, sounds like you have been fortunate so far -- although nobody can ever say 100% what is going to happen, the gene combination you have, has been associated with more mild cases of CF -- it appears that you are following that rule of thumb so far. Yes, CF is progressive, but it at least you can say you are still on the mild side so far. My kids have the exact same genes as you and your brother have -- Delta F508 & R117H. It is the R177H that is classified as the "mild" gene... meaning it functions close to normal so your body can function closer to normal that with other CF genes types.
If you have time, please read the first page of my blog (link below) to learn more about my kids, their symptoms & treatment. My daughter was misdiagnosed for 8 years -- they said she had "asthma with productive cough" Had she not been correctly diagnosed at age 14, she too may have been in the same predicament as your brother later on in life.
As for fertility problems -- yes it is common for women (and men) to have fertility problems -- in women the problem is thick mucus around the cervix that prevents the sperm from entering. Other people can tell you more about that -- I have heard that some women have been able to thin the mucus by taking Benadryl daily. Knowing that you have both CF genes, you may also want to look into carrier testing for your spouse/partner because you will pass on one of your CF genes to your baby. Many people want to know if their partner has a CF gene to pass on too. If your partner is not a carrier you have nothing to worry about - your child will only get the one gene from you (which would not cause them to have CF) and a normal one from your spouse/partner.
Now that you know you have CF you should be able to find out more from your doctors about everything. Be sure to go to a facility that is very experienced in treating adults with CF, it will make all the difference in the world in regards to your health.
This must be a very scary time for you -- I'm glad you found this site - you will gain a lot of knowledge and friendship here. Best wishes and please keep us posted.