Marina Louise Oneill
New member
My daughter has these mutations anyone else have these
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does anyone have the delta f508 and the rh117
- Thread starter Marina Louise Oneill
- Start date
kittenface
Member
Hi Marina,
I have these genes. I live in Canada. I'm a 47 year old woman and was diagnosed at age 37. My CF symptoms are mild. I'm pancreatic sufficient so I don't take enzymes. How old is your daughter?
I have these genes. I live in Canada. I'm a 47 year old woman and was diagnosed at age 37. My CF symptoms are mild. I'm pancreatic sufficient so I don't take enzymes. How old is your daughter?
Marina Louise Oneill
New member
my daughter is almost 6 months
Marina Louise Oneill
New member
what treatments do u use if any
kittenface
Member
Hi Marina,
I am starting some breathing treatments and exercise. I'm told the key to keeping our lungs clear is exercise. My goal is 5 days a week for 45 minutes. My weight when I was younger was always low but not related to CF. I was just really thin. I'm 5'11 and was always around 110 to 120 lbs as a teenager. Now I'm 155 and have been since my mid 30's which is a good weight. My parents both smoked in my house growing up. I had pneumonia and lung infections through out my life. My gene combination is considered mild and you'll see that there are other adults with this combination. How is your daughter doing? It's good to be diagnosed early since treatments have improved over the years and a CF clinic knows how to treat infections with the correct meds and treatment. I'm starting with a PEP breathing exercise and in 3 months will see if that works for me. I'm doing really well. and want to keep it that way so the key is to take care of myself. If you have any other questions feel free to send me a private message or post on here. Where do you live?
[h=1][/h]
I am starting some breathing treatments and exercise. I'm told the key to keeping our lungs clear is exercise. My goal is 5 days a week for 45 minutes. My weight when I was younger was always low but not related to CF. I was just really thin. I'm 5'11 and was always around 110 to 120 lbs as a teenager. Now I'm 155 and have been since my mid 30's which is a good weight. My parents both smoked in my house growing up. I had pneumonia and lung infections through out my life. My gene combination is considered mild and you'll see that there are other adults with this combination. How is your daughter doing? It's good to be diagnosed early since treatments have improved over the years and a CF clinic knows how to treat infections with the correct meds and treatment. I'm starting with a PEP breathing exercise and in 3 months will see if that works for me. I'm doing really well. and want to keep it that way so the key is to take care of myself. If you have any other questions feel free to send me a private message or post on here. Where do you live?
[h=1][/h]
Marina Louise Oneill
New member
i live in morgantown,pa . My daughter is doing well in july she had a failure to thrive which is why tey diagnosed her with cf. i currently am a smoker i dont smoke around my daughter. it is stressful with her having cf. she is doing well thanks for your post at least i know i am not alone in this situation
my 6 year old has delta F508 and we found out that he had cf because he was continueslly sick and they thought that it was asthma and acid reflex so they finnally did a sweat test it came back irregular. he got sick with namonia and then they did another sweat test and it came back positive. he was 5 months at the time we found out.
G
Guest
Guest
My husband is 52 years old and has d508 and r117. He rides his bike and swims regularly. His health has declined in the last year and he medically retired. He stays active and says that is key. He currently uses Oxygen at night, takes nebulizer treatments with hypertonic saline and Albuterol, he uses vest therapy which has really helped bring up secretions. He even participates in a triathlon in the summer. Swimming seems to open his lungs up and he feels he can breath better. No reason we know of why this works but it does so we just go with it. He says all people with CF should swim. You must quit smoking...for your child and so that you will be healthy to take care of your child. Kevin is also pancreatic sufficient and he does not take enzymes.