Genes DF508+384910 kb

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emerenta18

Guest
Hi all! I have never really posted much, I'm emer, 20 with cf, from Ireland, nice to meet you all <img src="i/expressions/face-icon-small-smile.gif" border="0"> ok so i know genes aren't supposed to matter but im just curious, im the only person at my clinic with these genes, and i have never met anyone else with them, just wondering, does anyone have them, and if you do, how are you doing healthwise, thanks all xx
 
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emerenta18

Guest
Hi all! I have never really posted much, I'm emer, 20 with cf, from Ireland, nice to meet you all <img src="i/expressions/face-icon-small-smile.gif" border="0"> ok so i know genes aren't supposed to matter but im just curious, im the only person at my clinic with these genes, and i have never met anyone else with them, just wondering, does anyone have them, and if you do, how are you doing healthwise, thanks all xx
 
E

emerenta18

Guest
Hi all! I have never really posted much, I'm emer, 20 with cf, from Ireland, nice to meet you all <img src="i/expressions/face-icon-small-smile.gif" border="0"> ok so i know genes aren't supposed to matter but im just curious, im the only person at my clinic with these genes, and i have never met anyone else with them, just wondering, does anyone have them, and if you do, how are you doing healthwise, thanks all xx
 
E

emerenta18

Guest
Hi all! I have never really posted much, I'm emer, 20 with cf, from Ireland, nice to meet you all <img src="i/expressions/face-icon-small-smile.gif" border="0"> ok so i know genes aren't supposed to matter but im just curious, im the only person at my clinic with these genes, and i have never met anyone else with them, just wondering, does anyone have them, and if you do, how are you doing healthwise, thanks all xx
 
E

emerenta18

Guest
Hi all! I have never really posted much, I'm emer, 20 with cf, from Ireland, nice to meet you all <img src="i/expressions/face-icon-small-smile.gif" border="0"> ok so i know genes aren't supposed to matter but im just curious, im the only person at my clinic with these genes, and i have never met anyone else with them, just wondering, does anyone have them, and if you do, how are you doing healthwise, thanks all xx
 
G

ginandbrea

New member
Hi Emer!

I am so excited to see your post! My daughter, Breanna is 10 and was diagnosed only a year ago with CF. You two have the same gene mutations, of course the DF508 is very common, but the 3849...... is not, it is actually rare. I haven not spoken to or met anyone else with the 3849.....

So about Breanna, again, she was not diagnosed until 9 y/o, the Drs. always said she had asthma. Breanna is 1 of the few CFers who is Pancreatic Sufficient which is in my opinion a reason for her late diagnosis and she was only sick with "Bronchitis" maybe 2 times per year from age 4 to 7, then it became for frequent. At age 8 she had pnuemonia and had not been gaining any weight for a year. The Drs. kept saying it was her asthma and just changed her meds. I begged them to do further testing because I knew something just was not right. The Drs. basically kept putting me off so I went to another Ped Dr., he evaluated Breanna for about 10 minutes and immediately suspected CF, did a chest X/Ray and by the time we walked back to the room from X/Ray he was on the phone with a Pulmonologist from Children's Hospital, emailing the X/Ray to him and ordering the sweat test.

It has only been a year, her FEV1 was 52% when diagnosed, now her baseline is about 85%. She has been in the hospital 3 times this year, basically because it has taken this year to figure out what works for her and what doesn't. At first we were doing 2 treatments per day, but that wasn't enough, now we do 3-4 treatments a day. She has MRSA. Overall I believe she is better, of course an earlier diagnosis would have been great and may have eliminated her permanent lung damage.

Breanna is a fighter, she is very active and doesn't stop even if she is sick ( I have to make her rest ). The weekend before her diagnosis we biked 5 miles with her FEV1 at 52%! She is the fastest runner in her grade level at school and does gymnastics 2 hours a night / 3 nights per week. Beginning tomorrow we are going to swim every night she does not have Gym (now that the heater is on in the pool).

So write me back PM or here and let me know how you are!

Take care!
Gina
 
G

ginandbrea

New member
Hi Emer!

I am so excited to see your post! My daughter, Breanna is 10 and was diagnosed only a year ago with CF. You two have the same gene mutations, of course the DF508 is very common, but the 3849...... is not, it is actually rare. I haven not spoken to or met anyone else with the 3849.....

So about Breanna, again, she was not diagnosed until 9 y/o, the Drs. always said she had asthma. Breanna is 1 of the few CFers who is Pancreatic Sufficient which is in my opinion a reason for her late diagnosis and she was only sick with "Bronchitis" maybe 2 times per year from age 4 to 7, then it became for frequent. At age 8 she had pnuemonia and had not been gaining any weight for a year. The Drs. kept saying it was her asthma and just changed her meds. I begged them to do further testing because I knew something just was not right. The Drs. basically kept putting me off so I went to another Ped Dr., he evaluated Breanna for about 10 minutes and immediately suspected CF, did a chest X/Ray and by the time we walked back to the room from X/Ray he was on the phone with a Pulmonologist from Children's Hospital, emailing the X/Ray to him and ordering the sweat test.

It has only been a year, her FEV1 was 52% when diagnosed, now her baseline is about 85%. She has been in the hospital 3 times this year, basically because it has taken this year to figure out what works for her and what doesn't. At first we were doing 2 treatments per day, but that wasn't enough, now we do 3-4 treatments a day. She has MRSA. Overall I believe she is better, of course an earlier diagnosis would have been great and may have eliminated her permanent lung damage.

Breanna is a fighter, she is very active and doesn't stop even if she is sick ( I have to make her rest ). The weekend before her diagnosis we biked 5 miles with her FEV1 at 52%! She is the fastest runner in her grade level at school and does gymnastics 2 hours a night / 3 nights per week. Beginning tomorrow we are going to swim every night she does not have Gym (now that the heater is on in the pool).

So write me back PM or here and let me know how you are!

Take care!
Gina
 
G

ginandbrea

New member
Hi Emer!

I am so excited to see your post! My daughter, Breanna is 10 and was diagnosed only a year ago with CF. You two have the same gene mutations, of course the DF508 is very common, but the 3849...... is not, it is actually rare. I haven not spoken to or met anyone else with the 3849.....

So about Breanna, again, she was not diagnosed until 9 y/o, the Drs. always said she had asthma. Breanna is 1 of the few CFers who is Pancreatic Sufficient which is in my opinion a reason for her late diagnosis and she was only sick with "Bronchitis" maybe 2 times per year from age 4 to 7, then it became for frequent. At age 8 she had pnuemonia and had not been gaining any weight for a year. The Drs. kept saying it was her asthma and just changed her meds. I begged them to do further testing because I knew something just was not right. The Drs. basically kept putting me off so I went to another Ped Dr., he evaluated Breanna for about 10 minutes and immediately suspected CF, did a chest X/Ray and by the time we walked back to the room from X/Ray he was on the phone with a Pulmonologist from Children's Hospital, emailing the X/Ray to him and ordering the sweat test.

It has only been a year, her FEV1 was 52% when diagnosed, now her baseline is about 85%. She has been in the hospital 3 times this year, basically because it has taken this year to figure out what works for her and what doesn't. At first we were doing 2 treatments per day, but that wasn't enough, now we do 3-4 treatments a day. She has MRSA. Overall I believe she is better, of course an earlier diagnosis would have been great and may have eliminated her permanent lung damage.

Breanna is a fighter, she is very active and doesn't stop even if she is sick ( I have to make her rest ). The weekend before her diagnosis we biked 5 miles with her FEV1 at 52%! She is the fastest runner in her grade level at school and does gymnastics 2 hours a night / 3 nights per week. Beginning tomorrow we are going to swim every night she does not have Gym (now that the heater is on in the pool).

So write me back PM or here and let me know how you are!

Take care!
Gina
 
G

ginandbrea

New member
Hi Emer!

I am so excited to see your post! My daughter, Breanna is 10 and was diagnosed only a year ago with CF. You two have the same gene mutations, of course the DF508 is very common, but the 3849...... is not, it is actually rare. I haven not spoken to or met anyone else with the 3849.....

So about Breanna, again, she was not diagnosed until 9 y/o, the Drs. always said she had asthma. Breanna is 1 of the few CFers who is Pancreatic Sufficient which is in my opinion a reason for her late diagnosis and she was only sick with "Bronchitis" maybe 2 times per year from age 4 to 7, then it became for frequent. At age 8 she had pnuemonia and had not been gaining any weight for a year. The Drs. kept saying it was her asthma and just changed her meds. I begged them to do further testing because I knew something just was not right. The Drs. basically kept putting me off so I went to another Ped Dr., he evaluated Breanna for about 10 minutes and immediately suspected CF, did a chest X/Ray and by the time we walked back to the room from X/Ray he was on the phone with a Pulmonologist from Children's Hospital, emailing the X/Ray to him and ordering the sweat test.

It has only been a year, her FEV1 was 52% when diagnosed, now her baseline is about 85%. She has been in the hospital 3 times this year, basically because it has taken this year to figure out what works for her and what doesn't. At first we were doing 2 treatments per day, but that wasn't enough, now we do 3-4 treatments a day. She has MRSA. Overall I believe she is better, of course an earlier diagnosis would have been great and may have eliminated her permanent lung damage.

Breanna is a fighter, she is very active and doesn't stop even if she is sick ( I have to make her rest ). The weekend before her diagnosis we biked 5 miles with her FEV1 at 52%! She is the fastest runner in her grade level at school and does gymnastics 2 hours a night / 3 nights per week. Beginning tomorrow we are going to swim every night she does not have Gym (now that the heater is on in the pool).

So write me back PM or here and let me know how you are!

Take care!
Gina
 
G

ginandbrea

New member
Hi Emer!
<br />
<br />I am so excited to see your post! My daughter, Breanna is 10 and was diagnosed only a year ago with CF. You two have the same gene mutations, of course the DF508 is very common, but the 3849...... is not, it is actually rare. I haven not spoken to or met anyone else with the 3849.....
<br />
<br />So about Breanna, again, she was not diagnosed until 9 y/o, the Drs. always said she had asthma. Breanna is 1 of the few CFers who is Pancreatic Sufficient which is in my opinion a reason for her late diagnosis and she was only sick with "Bronchitis" maybe 2 times per year from age 4 to 7, then it became for frequent. At age 8 she had pnuemonia and had not been gaining any weight for a year. The Drs. kept saying it was her asthma and just changed her meds. I begged them to do further testing because I knew something just was not right. The Drs. basically kept putting me off so I went to another Ped Dr., he evaluated Breanna for about 10 minutes and immediately suspected CF, did a chest X/Ray and by the time we walked back to the room from X/Ray he was on the phone with a Pulmonologist from Children's Hospital, emailing the X/Ray to him and ordering the sweat test.
<br />
<br />It has only been a year, her FEV1 was 52% when diagnosed, now her baseline is about 85%. She has been in the hospital 3 times this year, basically because it has taken this year to figure out what works for her and what doesn't. At first we were doing 2 treatments per day, but that wasn't enough, now we do 3-4 treatments a day. She has MRSA. Overall I believe she is better, of course an earlier diagnosis would have been great and may have eliminated her permanent lung damage.
<br />
<br />Breanna is a fighter, she is very active and doesn't stop even if she is sick ( I have to make her rest ). The weekend before her diagnosis we biked 5 miles with her FEV1 at 52%! She is the fastest runner in her grade level at school and does gymnastics 2 hours a night / 3 nights per week. Beginning tomorrow we are going to swim every night she does not have Gym (now that the heater is on in the pool).
<br />
<br />So write me back PM or here and let me know how you are!
<br />
<br />Take care!
<br />Gina
 
E

emerenta18

Guest
Hi Gina, so nice to meet you! I was quite surprised to get such a quick reply, thanks for replying, I was diagnosed when i was 14, i had a lot of ear infections as a child, chronic sinusitis and had a few operations on my ears, which seemed to improve things, i had maybe chest infections twice a year, i developed a bad cough at 12, which was blamed on my sinuses and i had a lot of polyp removal surgeries, and the post nasal drip from my nose to my chest was blamed for my cough and i was constantly on steroids and antibiotics, i too had the asthma diagnosis but a ct scan showed lung damage (bronchiectasis) so a sweat test was ordered and it was positive, my lung function at diagnosis was 74% and i stayed extremely well up until last year,im also pancreatic sufficient, although i do need to take a,d,e and k, I also have MRSA since january last year, acid reflux, My lung function was actually 90% up until last year, it is now 70% and i am on my third lot of IVs in nine months, i was incredibly lucky not to need IVs until i was nineteen, as orals always cleared up infections, it seems me and Breanna do have some similarities, I hope she's adjusting to the diagnosis and is feeling a lot better now! It can be a very rough journey getting there, but she sounds very positive and active, which is excellent! If you ever want to know anything else feel free to pm me or write back xx
 
E

emerenta18

Guest
Hi Gina, so nice to meet you! I was quite surprised to get such a quick reply, thanks for replying, I was diagnosed when i was 14, i had a lot of ear infections as a child, chronic sinusitis and had a few operations on my ears, which seemed to improve things, i had maybe chest infections twice a year, i developed a bad cough at 12, which was blamed on my sinuses and i had a lot of polyp removal surgeries, and the post nasal drip from my nose to my chest was blamed for my cough and i was constantly on steroids and antibiotics, i too had the asthma diagnosis but a ct scan showed lung damage (bronchiectasis) so a sweat test was ordered and it was positive, my lung function at diagnosis was 74% and i stayed extremely well up until last year,im also pancreatic sufficient, although i do need to take a,d,e and k, I also have MRSA since january last year, acid reflux, My lung function was actually 90% up until last year, it is now 70% and i am on my third lot of IVs in nine months, i was incredibly lucky not to need IVs until i was nineteen, as orals always cleared up infections, it seems me and Breanna do have some similarities, I hope she's adjusting to the diagnosis and is feeling a lot better now! It can be a very rough journey getting there, but she sounds very positive and active, which is excellent! If you ever want to know anything else feel free to pm me or write back xx
 
E

emerenta18

Guest
Hi Gina, so nice to meet you! I was quite surprised to get such a quick reply, thanks for replying, I was diagnosed when i was 14, i had a lot of ear infections as a child, chronic sinusitis and had a few operations on my ears, which seemed to improve things, i had maybe chest infections twice a year, i developed a bad cough at 12, which was blamed on my sinuses and i had a lot of polyp removal surgeries, and the post nasal drip from my nose to my chest was blamed for my cough and i was constantly on steroids and antibiotics, i too had the asthma diagnosis but a ct scan showed lung damage (bronchiectasis) so a sweat test was ordered and it was positive, my lung function at diagnosis was 74% and i stayed extremely well up until last year,im also pancreatic sufficient, although i do need to take a,d,e and k, I also have MRSA since january last year, acid reflux, My lung function was actually 90% up until last year, it is now 70% and i am on my third lot of IVs in nine months, i was incredibly lucky not to need IVs until i was nineteen, as orals always cleared up infections, it seems me and Breanna do have some similarities, I hope she's adjusting to the diagnosis and is feeling a lot better now! It can be a very rough journey getting there, but she sounds very positive and active, which is excellent! If you ever want to know anything else feel free to pm me or write back xx
 
E

emerenta18

Guest
Hi Gina, so nice to meet you! I was quite surprised to get such a quick reply, thanks for replying, I was diagnosed when i was 14, i had a lot of ear infections as a child, chronic sinusitis and had a few operations on my ears, which seemed to improve things, i had maybe chest infections twice a year, i developed a bad cough at 12, which was blamed on my sinuses and i had a lot of polyp removal surgeries, and the post nasal drip from my nose to my chest was blamed for my cough and i was constantly on steroids and antibiotics, i too had the asthma diagnosis but a ct scan showed lung damage (bronchiectasis) so a sweat test was ordered and it was positive, my lung function at diagnosis was 74% and i stayed extremely well up until last year,im also pancreatic sufficient, although i do need to take a,d,e and k, I also have MRSA since january last year, acid reflux, My lung function was actually 90% up until last year, it is now 70% and i am on my third lot of IVs in nine months, i was incredibly lucky not to need IVs until i was nineteen, as orals always cleared up infections, it seems me and Breanna do have some similarities, I hope she's adjusting to the diagnosis and is feeling a lot better now! It can be a very rough journey getting there, but she sounds very positive and active, which is excellent! If you ever want to know anything else feel free to pm me or write back xx
 
E

emerenta18

Guest
Hi Gina, so nice to meet you! I was quite surprised to get such a quick reply, thanks for replying, I was diagnosed when i was 14, i had a lot of ear infections as a child, chronic sinusitis and had a few operations on my ears, which seemed to improve things, i had maybe chest infections twice a year, i developed a bad cough at 12, which was blamed on my sinuses and i had a lot of polyp removal surgeries, and the post nasal drip from my nose to my chest was blamed for my cough and i was constantly on steroids and antibiotics, i too had the asthma diagnosis but a ct scan showed lung damage (bronchiectasis) so a sweat test was ordered and it was positive, my lung function at diagnosis was 74% and i stayed extremely well up until last year,im also pancreatic sufficient, although i do need to take a,d,e and k, I also have MRSA since january last year, acid reflux, My lung function was actually 90% up until last year, it is now 70% and i am on my third lot of IVs in nine months, i was incredibly lucky not to need IVs until i was nineteen, as orals always cleared up infections, it seems me and Breanna do have some similarities, I hope she's adjusting to the diagnosis and is feeling a lot better now! It can be a very rough journey getting there, but she sounds very positive and active, which is excellent! If you ever want to know anything else feel free to pm me or write back xx
 
G

ginandbrea

New member
Nice meeting you too Emer !

Wow! You guys do have so many similarities, with the late diagnosis, PS, MRSA...

I was thinking of something you wrote with regards to your lung function. It has been really good at 90% until last year and also last year you tested + for MRSA, now you are on your third round of IV antibiotics and your lung function is down to 70%.

I feel really strongly about the MRSA. Breanna's Drs. say "it's nothing to worry about", but I believe it is! They will only treat the MRSA with Bactrim when it flares up, but will not really try to eradicate it. I have found a product Allicin by Allimax I believe was founded in England and there is a distributor here in the US. They recommend taking (6) Allicin caps per day for 3 months to eradicate the MRSA and then a maintenance dose of (2) caps per day. Breanna is on her 2nd month and it has helped her alot. I really believe the MRSA has a lot to do with the lower lung function as well as the more frequent infections and antibiotics.

What are your Drs. doing for your MRSA?
 
G

ginandbrea

New member
Nice meeting you too Emer !

Wow! You guys do have so many similarities, with the late diagnosis, PS, MRSA...

I was thinking of something you wrote with regards to your lung function. It has been really good at 90% until last year and also last year you tested + for MRSA, now you are on your third round of IV antibiotics and your lung function is down to 70%.

I feel really strongly about the MRSA. Breanna's Drs. say "it's nothing to worry about", but I believe it is! They will only treat the MRSA with Bactrim when it flares up, but will not really try to eradicate it. I have found a product Allicin by Allimax I believe was founded in England and there is a distributor here in the US. They recommend taking (6) Allicin caps per day for 3 months to eradicate the MRSA and then a maintenance dose of (2) caps per day. Breanna is on her 2nd month and it has helped her alot. I really believe the MRSA has a lot to do with the lower lung function as well as the more frequent infections and antibiotics.

What are your Drs. doing for your MRSA?
 
G

ginandbrea

New member
Nice meeting you too Emer !

Wow! You guys do have so many similarities, with the late diagnosis, PS, MRSA...

I was thinking of something you wrote with regards to your lung function. It has been really good at 90% until last year and also last year you tested + for MRSA, now you are on your third round of IV antibiotics and your lung function is down to 70%.

I feel really strongly about the MRSA. Breanna's Drs. say "it's nothing to worry about", but I believe it is! They will only treat the MRSA with Bactrim when it flares up, but will not really try to eradicate it. I have found a product Allicin by Allimax I believe was founded in England and there is a distributor here in the US. They recommend taking (6) Allicin caps per day for 3 months to eradicate the MRSA and then a maintenance dose of (2) caps per day. Breanna is on her 2nd month and it has helped her alot. I really believe the MRSA has a lot to do with the lower lung function as well as the more frequent infections and antibiotics.

What are your Drs. doing for your MRSA?
 
G

ginandbrea

New member
Nice meeting you too Emer !

Wow! You guys do have so many similarities, with the late diagnosis, PS, MRSA...

I was thinking of something you wrote with regards to your lung function. It has been really good at 90% until last year and also last year you tested + for MRSA, now you are on your third round of IV antibiotics and your lung function is down to 70%.

I feel really strongly about the MRSA. Breanna's Drs. say "it's nothing to worry about", but I believe it is! They will only treat the MRSA with Bactrim when it flares up, but will not really try to eradicate it. I have found a product Allicin by Allimax I believe was founded in England and there is a distributor here in the US. They recommend taking (6) Allicin caps per day for 3 months to eradicate the MRSA and then a maintenance dose of (2) caps per day. Breanna is on her 2nd month and it has helped her alot. I really believe the MRSA has a lot to do with the lower lung function as well as the more frequent infections and antibiotics.

What are your Drs. doing for your MRSA?
 
G

ginandbrea

New member
Nice meeting you too Emer !
<br />
<br />Wow! You guys do have so many similarities, with the late diagnosis, PS, MRSA...
<br />
<br />I was thinking of something you wrote with regards to your lung function. It has been really good at 90% until last year and also last year you tested + for MRSA, now you are on your third round of IV antibiotics and your lung function is down to 70%.
<br />
<br />I feel really strongly about the MRSA. Breanna's Drs. say "it's nothing to worry about", but I believe it is! They will only treat the MRSA with Bactrim when it flares up, but will not really try to eradicate it. I have found a product Allicin by Allimax I believe was founded in England and there is a distributor here in the US. They recommend taking (6) Allicin caps per day for 3 months to eradicate the MRSA and then a maintenance dose of (2) caps per day. Breanna is on her 2nd month and it has helped her alot. I really believe the MRSA has a lot to do with the lower lung function as well as the more frequent infections and antibiotics.
<br />
<br />What are your Drs. doing for your MRSA?
<br />
<br />
 
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