Hello- My husband (Jay) and I just found out today that he has CF. This process started with us trying to conceive and finding out that Jay has Congenital Bilateral Absence of the Vas Deferens. We had the genetic testing done and found to our shock that he is not a carrier like we expected, but that he has CF. My testing came back negative for the 88 most common mutations. I had more blood drawn today to test for the poly T region of chromosome 7. Jays' results were for "delta F508 and 9T" on one chromosome and "R115H and 7T" on the other. Since I am most likely not a carrier, I am wondering what the implications for a future child would be if I have a 7T or a 5T (in the poly T region) on my chromosomes. The internet is a huge place and I have been trying to find answers, but nothing seems specific. This has been such a long process for us so far, but alot of questions may be answered for us now- Jay was diagnosed with Diabetes (Type II), four years ago- there has been no real explanation for why he is a diabetic- his sugar level doesn't respond to medications, but somewhat to low-carb/fat diet, he also has horrible sinus and allergy problems. We were so overwhelmed with information today that we didn't think about all these questions. Any thoughts and insight would be greatly appreciated as our next appointment with the genetic counselor is at least 2 weeks away. Thank You- Colleen
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Any information would be great
- Thread starter Colleen
- Start date
Colleen,
Wow! What a lot to digest in such a short time for you & Jay! What age is Jay? It sounds as if he's been blessed w/ pretty good health for him to just be diagnosed w/ CF, which is good.
When you say terrible sinus/allergy problems, do mean sinus or lungs or both?
The diabetes he has is most likely CFRD (Cystic Fibrosis Related Diabetes). It is similiar to type 2 diabetes, but needs to be treated a little differently. Since you mentioned that his sugars don't respond to meds, I'm assuming you mean pill form of insulin. I'm just guessing he would do great w/ insulin shots, but then, who wants those, huh? Unfortunately, CFRD is most often treated w/ insulin shots. Not always, but often.
If your Dr has not suggested that Jay visit a CF Clinic, I would highly advise that he does. They will have information on CFRD, sinus problems w/ CF, and general information on CF. CF sounds like a grim diagnosis, but w/ drugs that are being introduced and some that are in clinical trial phases, he should do well.
Keep in touch.
<img src="i/expressions/rose.gif" border="0">
Wow! What a lot to digest in such a short time for you & Jay! What age is Jay? It sounds as if he's been blessed w/ pretty good health for him to just be diagnosed w/ CF, which is good.
When you say terrible sinus/allergy problems, do mean sinus or lungs or both?
The diabetes he has is most likely CFRD (Cystic Fibrosis Related Diabetes). It is similiar to type 2 diabetes, but needs to be treated a little differently. Since you mentioned that his sugars don't respond to meds, I'm assuming you mean pill form of insulin. I'm just guessing he would do great w/ insulin shots, but then, who wants those, huh? Unfortunately, CFRD is most often treated w/ insulin shots. Not always, but often.
If your Dr has not suggested that Jay visit a CF Clinic, I would highly advise that he does. They will have information on CFRD, sinus problems w/ CF, and general information on CF. CF sounds like a grim diagnosis, but w/ drugs that are being introduced and some that are in clinical trial phases, he should do well.
Keep in touch.
<img src="i/expressions/rose.gif" border="0">
My 17 year old son has CF and he also has cystic fibrosis related diabetes (CFRD). I would highly recommend that your husband see a CF doctor and also a doctor that specializes in CFRD. My son has done very well with his insulin shots. He is treated differently than other diabetes patients. His diet is quite different than most diabetes patients. He takes quite a bit of insulin in a day to cover the amount of food he needs to consume due to CF. He takes 7-8 shots per day. It took some getting used to, but it doesn't bother him to take the shots at all. Good luck!
I wonder how you can know with mutations are in each cromossome...I mean, I tought you could know with mutations you have, but not which one is in each cromossome. My son has 3 cf mutations...and we don't know which ones are the ones causing his cf...it would be important to a future treatment or cure. and my husband or I are a double carrier...having 2 cf gens but not having cf....what the test to know the gen is each cromossome??