3849+10kb C to T and Df508, any other people with these mutations?

E

emerenta18

Guest
I am just curious because I am from Ireland and the majority of people with CF here are DDF508 so I was wondering how others are doing with my genes, I have never found anyone else in Ireland with my genes and the life expectancy is much lower here so it would be nice to see how people in the US are getting on, thanks.
 
E

emerenta18

Guest
I am just curious because I am from Ireland and the majority of people with CF here are DDF508 so I was wondering how others are doing with my genes, I have never found anyone else in Ireland with my genes and the life expectancy is much lower here so it would be nice to see how people in the US are getting on, thanks.
 
E

emerenta18

Guest
I am just curious because I am from Ireland and the majority of people with CF here are DDF508 so I was wondering how others are doing with my genes, I have never found anyone else in Ireland with my genes and the life expectancy is much lower here so it would be nice to see how people in the US are getting on, thanks.
 
Y

ymikhale

New member
3849+10kb T to C and Df508, any other people with these mutations?

did you mean C to T? my dd has these mutations. I am originally from Russia but currently live in France. She is 3 y/o and doing ok but not symptomless, cultured PA twice but not hospitalisations yet (touch wood)
 
Y

ymikhale

New member
3849+10kb T to C and Df508, any other people with these mutations?

did you mean C to T? my dd has these mutations. I am originally from Russia but currently live in France. She is 3 y/o and doing ok but not symptomless, cultured PA twice but not hospitalisations yet (touch wood)
 
Y

ymikhale

New member
3849+10kb T to C and Df508, any other people with these mutations?

did you mean C to T? my dd has these mutations. I am originally from Russia but currently live in France. She is 3 y/o and doing ok but not symptomless, cultured PA twice but not hospitalisations yet (touch wood)
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

ah thanks for that, I edited my post. Well I cultured PA once since I was diagnosed at age 14 (I'm 22 now) and I'm not colonised with it so hopefully your little one won't be either, at least not for a very long time.
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

ah thanks for that, I edited my post. Well I cultured PA once since I was diagnosed at age 14 (I'm 22 now) and I'm not colonised with it so hopefully your little one won't be either, at least not for a very long time.
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

ah thanks for that, I edited my post. Well I cultured PA once since I was diagnosed at age 14 (I'm 22 now) and I'm not colonised with it so hopefully your little one won't be either, at least not for a very long time.
 
E

edan

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Hi! There are at least 10 people on here with these mutations, including my 3 year old. Sending you a personal message...
 
E

edan

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Hi! There are at least 10 people on here with these mutations, including my 3 year old. Sending you a personal message...
 
E

edan

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Hi! There are at least 10 people on here with these mutations, including my 3 year old. Sending you a personal message...
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Thanks for the advice Edan, after some helpful tips from yourself I'm wondering what everyone else's treatment regime is like? I don't know if I'm doing enough at the moment. My pfts are in the 60s and I need IV antibiotics every 3 months and I culture MRSA, I was diagnosed with bronchiectasis at age 13. I take bronchodialators, hypertonic saline and I do physio, I also take the usual pills; azithromycin, nexium, calchichew d3forte, aquadeks and a sinus spray. I think that's it!
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Thanks for the advice Edan, after some helpful tips from yourself I'm wondering what everyone else's treatment regime is like? I don't know if I'm doing enough at the moment. My pfts are in the 60s and I need IV antibiotics every 3 months and I culture MRSA, I was diagnosed with bronchiectasis at age 13. I take bronchodialators, hypertonic saline and I do physio, I also take the usual pills; azithromycin, nexium, calchichew d3forte, aquadeks and a sinus spray. I think that's it!
 
E

emerenta18

Guest
3849+10kb T to C and Df508, any other people with these mutations?

Thanks for the advice Edan, after some helpful tips from yourself I'm wondering what everyone else's treatment regime is like? I don't know if I'm doing enough at the moment. My pfts are in the 60s and I need IV antibiotics every 3 months and I culture MRSA, I was diagnosed with bronchiectasis at age 13. I take bronchodialators, hypertonic saline and I do physio, I also take the usual pills; azithromycin, nexium, calchichew d3forte, aquadeks and a sinus spray. I think that's it!
 
A

AleksandraKaczynska

New member
Hi, my daughter is also 3849+10kbC>T / R533X.
I was told that the 3849+10kbC>T is usaully the gene leading and is a milder case. i'm from Poland - so we're neighbours <img src="i/expressions/face-icon-small-happy.gif" border="0">
I'll send you ifo how we do her treatment so far by persona message - but I can tell you it's similar to edan's <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
A

AleksandraKaczynska

New member
Hi, my daughter is also 3849+10kbC>T / R533X.
I was told that the 3849+10kbC>T is usaully the gene leading and is a milder case. i'm from Poland - so we're neighbours <img src="i/expressions/face-icon-small-happy.gif" border="0">
I'll send you ifo how we do her treatment so far by persona message - but I can tell you it's similar to edan's <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
A

AleksandraKaczynska

New member
Hi, my daughter is also 3849+10kbC>T / R533X.
<br />I was told that the 3849+10kbC>T is usaully the gene leading and is a milder case. i'm from Poland - so we're neighbours <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />I'll send you ifo how we do her treatment so far by persona message - but I can tell you it's similar to edan's <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
E

emerenta18

Guest
thanks for your post aleksandra, I'd really appreciate that, it's good to get a better idea of what medication regimes people have in other countries, I hope your daughter is well!
 
E

emerenta18

Guest
thanks for your post aleksandra, I'd really appreciate that, it's good to get a better idea of what medication regimes people have in other countries, I hope your daughter is well!
 
You must log in or register to reply here.
Top