Ashkenazi Jewish descent

[Liza]

Allie, your knowledge is wonderful. Neither of our families had a history of CF as far as we knew before our girls. My husbands family had done some searching for a niece that was born with a skin condition (she wasn't supposed to live to age 5, she is now in her 30's & married) that they (physicians) decided was genetic. We know that his father's side is French, his mother was English from Liverpool. When you mentioned your thoughts that G542X was from southern Europe I immediately thought of my family. I am Mexican, with my paternal great-grandmother being full Spanish but we don't know where from and my fathers side of the family being traced to the Basque region of Spain. To a village on the edge of the Pyrennes near Pamplona. I have often wondered where the gene could have come from. In the beginning when Anna was diagnosed (at age 3) we were told it was a predominantly caucasion disease. No one else from my family has ever been tested to see if they are carriers, so we don't know which side it's on.

Thanks for your info.

 

[Liza]

Allie, your knowledge is wonderful. Neither of our families had a history of CF as far as we knew before our girls. My husbands family had done some searching for a niece that was born with a skin condition (she wasn't supposed to live to age 5, she is now in her 30's & married) that they (physicians) decided was genetic. We know that his father's side is French, his mother was English from Liverpool. When you mentioned your thoughts that G542X was from southern Europe I immediately thought of my family. I am Mexican, with my paternal great-grandmother being full Spanish but we don't know where from and my fathers side of the family being traced to the Basque region of Spain. To a village on the edge of the Pyrennes near Pamplona. I have often wondered where the gene could have come from. In the beginning when Anna was diagnosed (at age 3) we were told it was a predominantly caucasion disease. No one else from my family has ever been tested to see if they are carriers, so we don't know which side it's on.

Thanks for your info.

 

[Rebjane]

hi hopefull,

my daughter's weight flucuates but lately it's been pretty good. i think she weighed 39.4 lbs last doc appointment. my daughter does not yet culture pseudo but does culture MRSA. When she gets sick, she does lose weight easily but fortunately she is a pretty good eater and loves meat, chicken and fish. We go to a local CF clinic that is pretty small but they have known her since she was born. Her doc will order things over the phone and will listen to me. i also take her to a bigger CF center(more reasearch oriented) once a year. My daughter does to nursery school 2 times a week for a few hours and is home with me during the day. She also dances once a week. She had ALOT of digestive problems, meconiium ileus, adhesions(2 abdominal surgeries before she turned 6 months). She is very pancreatic insufficient. She had one respiratory admission to the hsopital when she first cultured MRSA at 2 and a couple months and since that time we've kept things under control at home.

We are also very hopeful about the PCt124 study, i hope things work out with this drug.

 

[Rebjane]

hi hopefull,

my daughter's weight flucuates but lately it's been pretty good. i think she weighed 39.4 lbs last doc appointment. my daughter does not yet culture pseudo but does culture MRSA. When she gets sick, she does lose weight easily but fortunately she is a pretty good eater and loves meat, chicken and fish. We go to a local CF clinic that is pretty small but they have known her since she was born. Her doc will order things over the phone and will listen to me. i also take her to a bigger CF center(more reasearch oriented) once a year. My daughter does to nursery school 2 times a week for a few hours and is home with me during the day. She also dances once a week. She had ALOT of digestive problems, meconiium ileus, adhesions(2 abdominal surgeries before she turned 6 months). She is very pancreatic insufficient. She had one respiratory admission to the hsopital when she first cultured MRSA at 2 and a couple months and since that time we've kept things under control at home.

We are also very hopeful about the PCt124 study, i hope things work out with this drug.

 

[Rebjane]

hi hopefull,

my daughter's weight flucuates but lately it's been pretty good. i think she weighed 39.4 lbs last doc appointment. my daughter does not yet culture pseudo but does culture MRSA. When she gets sick, she does lose weight easily but fortunately she is a pretty good eater and loves meat, chicken and fish. We go to a local CF clinic that is pretty small but they have known her since she was born. Her doc will order things over the phone and will listen to me. i also take her to a bigger CF center(more reasearch oriented) once a year. My daughter does to nursery school 2 times a week for a few hours and is home with me during the day. She also dances once a week. She had ALOT of digestive problems, meconiium ileus, adhesions(2 abdominal surgeries before she turned 6 months). She is very pancreatic insufficient. She had one respiratory admission to the hsopital when she first cultured MRSA at 2 and a couple months and since that time we've kept things under control at home.

We are also very hopeful about the PCt124 study, i hope things work out with this drug.

 

[hopefullmom]

Rebecca, Hi my daughter is also very pancreatic insufficient. What is MRSA, is that staph? My little girl weighs 28lbs, that is a good idea about going once a year to a research clinic. I am also currently waiting on a call from JOHN HOPKINS, I know they do alot of research. Maci is in preschool 3 days a week and she loves it. I have been keeping her home lately because of the TOBI and other regimens she is tring to get used to. PTC124 sounds so incouraging, but I try not to get to excited about it, I am going to a conference in Virgingia in March and I hope to learn alot about new treatments. Christa mom to Maci 4

 

[hopefullmom]

Rebecca, Hi my daughter is also very pancreatic insufficient. What is MRSA, is that staph? My little girl weighs 28lbs, that is a good idea about going once a year to a research clinic. I am also currently waiting on a call from JOHN HOPKINS, I know they do alot of research. Maci is in preschool 3 days a week and she loves it. I have been keeping her home lately because of the TOBI and other regimens she is tring to get used to. PTC124 sounds so incouraging, but I try not to get to excited about it, I am going to a conference in Virgingia in March and I hope to learn alot about new treatments. Christa mom to Maci 4

 

[hopefullmom]

Rebecca, Hi my daughter is also very pancreatic insufficient. What is MRSA, is that staph? My little girl weighs 28lbs, that is a good idea about going once a year to a research clinic. I am also currently waiting on a call from JOHN HOPKINS, I know they do alot of research. Maci is in preschool 3 days a week and she loves it. I have been keeping her home lately because of the TOBI and other regimens she is tring to get used to. PTC124 sounds so incouraging, but I try not to get to excited about it, I am going to a conference in Virgingia in March and I hope to learn alot about new treatments. Christa mom to Maci 4

 

[Rebjane]

MRSA is staph but it the resistant one. It's methicillin-resistant staph areus. We really are not sure how she got it but my guess is from the hospital somehow. Though this bacteria is now more common is the general community(unfortunately)

 

[Rebjane]

MRSA is staph but it the resistant one. It's methicillin-resistant staph areus. We really are not sure how she got it but my guess is from the hospital somehow. Though this bacteria is now more common is the general community(unfortunately)

 

[Rebjane]

MRSA is staph but it the resistant one. It's methicillin-resistant staph areus. We really are not sure how she got it but my guess is from the hospital somehow. Though this bacteria is now more common is the general community(unfortunately)