Hi All,My 22 month-old son was diagnosed in July with CF, and I have mostly been lurking here. Anyway, we just got his DNA results back and he is a Double Delta 508. The Dr. says that this is the most common and most severe form of CF. What can I expect? Up to this point he has been extremely healthy. He is small and he had icky poops but other than that you would never know. I need some help here and some encouragement here.Thanks,Kelly Mom to Lucy (5) no CF and Dominic w/CF
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.
To those who know their genotype
- Thread starter anonymous
- Start date
Kelly, Our daughter has the double Delta F508 gene as well. Our dr told us that the mutation signifies the severity of the pancreas problem but not the lungs. This has been a discussion in past conversations as well. My daughter is doing well and at 3 1/2 has never been hospitalized. Her enzymes are controlled and her stools are normal now. She does everything a healthy child would do, reads, ballet, gymnastics, swimming etc. She does have a problem with her sinuses and reflux, but I don't know if that is related to the mutation or not (I don't believe so).Delta F508 is the most common, but I don't know that it is the most severe. Knowledge is power and this is a good place to talk to others and see that they have the same mutation and are doing fine. Because it is the most common it is the one that they are working on more closely and that is to your advantage.a.m.
Hi Kelly,The delta f508 is the most common mutation. I know many here on this board and on other boards who have double delta f508 and they have heard the same thing as you. The strange thing is that most of them are pretty healthy, comparitively speaking. So, I think that like so many things, the severity of CF has to do with a combination of factors including genotype but not exclusively genotype. What we do as parents/caregivers has an effect too! When we make sure they are getting their enzymes and other breathing treatments, we are affecting this disease and increasing our children's chances for a long life.Andrea
Hi Kelly,I have two daughters with CF that are double delta f 508. They are 9 and 5. I was told that people with that gene type ussually have moderate to severe disease. My 9 year old is doing excellent. She has only been in the hospital 3 times since her initial diagnoses at 3 weeks old. She is very active. She rides horses and is a cheerleader. My 5 year old is also doing well. She doesn't have any lung problems her issues are mainly digestive and liver related. My kids lead completly normal lives exept for taking medication and getting chest PT. They also do really well in school and have lots of friends. Their friends parents have been very supportive and are comfortable when they have my kids giving them enzymes.One thing I think is extremly helpful for the lungs is excerise. I have found that physical excerise has really helped my daughters health. Hope this is a little helpful.Suemom to: Kelly 14 no cf, Kim 12 no cf, Brittany 9 w/cf, Molly 5 w/cf
I am a 19 year old with double delta F508 too. I have been pretty healthy my whole life and in fact I wasn't diagnosed till I was 14 years old. I have never been hospitalized and am very active. I agree with the last post that staying active is the best way to stay healthy. Also, doing all your treatments is SO important. My docs are always impressed when I tell them that I do everything they tell me too every day (and I do it too, I don't just tell them that lol) They always say how few people actually do EVERYTHING they should, which boggles my mind. Why wuoldn't you do everthing possible to stay healthy since you are dealing with your life! Make sure your son gets all of his treatments and make sure to teach him responsibility about his own treatments so that he will continue to take care of himself when he is on his own. Also, educate yourself because you will feel so much more in power of the disease if you can bring up different treatments to your doctors or ask questions about some of the latest research you read about. If it wasn't for my dad, who researches a lot (and I do too now) I would have never been given the vest because he was the one who asked if I could use it and fought for it. I also would not have been put on the drugs that got rid of my staph. Sorry, I think this got really off topic...Emily 19 w/CF
i don't know about Delta F508 being most severe mutation... it is indeed most common. i'm a double delta f508 myself as well. i'm definitely going to discuss the severity of that mutation with my doctor, next time i'm there - week and a half. the only thing i have to say is that if that's the most severe mutation, the cf population is doing good <img src="i/expressions/face-icon-small-smile.gif" border="0"> because as i experienced that, i only started having lung problems at the age of seven, was in a very stabilized condition up until i was 17 and may i add, it was a brilliant condition, i even got a remark once from a PFT's technician - "are you certain you got cf with those pft's?" - and since then, although things went downhill, i'm still doing good and leading a very normal life, with schooling, friends, parties, dates and relationships and sex, and whatever can be found in a life of a twenty [almost 21] year old. basically, it's like everybody says - just take the best care of cf. doing all the treatments, taking all the meds and exercising is the key to good condition.
I am 30 yr old female. I also have a double delta F508. My lungs are doing ok now...however that was how I was diagnosed. When I was born my lung probs were pretty severe. I almost didnt make it and had my lungs collapse several times as an infant. My digestive probs were mild at that time. As I have aged.....the digestive probs have become worse...and the lungs better.....strange huh? Just thought I would share with you my severities. Even people with the double delta F508s are very different. However, I was diagnosed at just a few weeks old because of the severity of the lungs, but I did have all the symptoms digestively also. Take CareDea
My 21 month old daughter has double delta f508 as well. She has remained fairly healthy. We struggle to get weight on her, but she has had a consistent growth curve for her. Her lungs have remained fairly good for which we are extremely thankful. We do cpt twice a day as a preventitive measure.She is an active almost 2 year old. That could be why she doesn't gain any weight. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope this helps some.christiemommy to twins Malachi wo cf and Mylee wcf
My 10 year old daughter is also double delta F508. She has had mainly GI problems and difficulty with maintaining her weight. We had g-tube placed when she was 7 and that has definitely helped with her weight. She is now in the 25th percentile for height and weight - and has all of a sudden really started to put on the pounds (thank goodness). Her CF specialist stated that the mutation was the most common and for that we should be thankful because it is the mutation that most of the research and gene therapy studies is based upon. States that severity and prognosis is different for everyone & cannot be determined by the mutation.