TreasureGoddess
Member
my son is 12 yrs, DDF508, diagnosed at 3.5 months (should've been diagnosed at birth, it was a LONG three months) PFTs at 95% pre-cfrd
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DDF508
- Thread starter LMG453
- Start date
TreasureGoddess
Member
my son is 12 yrs, DDF508, diagnosed at 3.5 months (should've been diagnosed at birth, it was a LONG three months) PFTs at 95% pre-cfrd
AshleyOlvey
New member
My 10 month old little girl, Boston has heterozygous mutations: DDF508 & R553X. She was diagnosed via the Metabolic Screening that CF was added to a few years back. They do this Metabolic Screening when the babies are 48 hrs old in the hospital. We were called by our pediatrician when she was 11 days old ona Fridayand were told this Met Screen was just "suggestive of" CF. They already had our appt. set @ the CF center @ Riley Hospital in Indianapolis for the following Monday. We met the team and went to the lab for the dreaded sweat test... which came back very positive (even only being 2 wks old). She's too young for PFTs right now.
Hope all is well as it can be for you and your husband! Boston and I will add him to our nightly prayers<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope all is well as it can be for you and your husband! Boston and I will add him to our nightly prayers<img src="i/expressions/face-icon-small-smile.gif" border="0">
AshleyOlvey
New member
My 10 month old little girl, Boston has heterozygous mutations: DDF508 & R553X. She was diagnosed via the Metabolic Screening that CF was added to a few years back. They do this Metabolic Screening when the babies are 48 hrs old in the hospital. We were called by our pediatrician when she was 11 days old ona Fridayand were told this Met Screen was just "suggestive of" CF. They already had our appt. set @ the CF center @ Riley Hospital in Indianapolis for the following Monday. We met the team and went to the lab for the dreaded sweat test... which came back very positive (even only being 2 wks old). She's too young for PFTs right now.
Hope all is well as it can be for you and your husband! Boston and I will add him to our nightly prayers<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope all is well as it can be for you and your husband! Boston and I will add him to our nightly prayers<img src="i/expressions/face-icon-small-smile.gif" border="0">
breatheforher
New member
My daughter is 18 - DDF508 - diagnosed at 15 months. FEV1 28% - hospitalized every 3 months for the past 3 years. She also has asthma, CFRD, osteoporosis, osteoarthritis, g/tube, port, gallbladder removed age 7 related to CF, 5 pathological fractures r/t CF........the past 3 years have been very trying :-(
breatheforher
New member
My daughter is 18 - DDF508 - diagnosed at 15 months. FEV1 28% - hospitalized every 3 months for the past 3 years. She also has asthma, CFRD, osteoporosis, osteoarthritis, g/tube, port, gallbladder removed age 7 related to CF, 5 pathological fractures r/t CF........the past 3 years have been very trying :-(
M
moxie1
Guest
I'm also DDF508. I'm 36 years old. FEV1 is 70%. I was diagnosed before the age of 1.
M
moxie1
Guest
I'm also DDF508. I'm 36 years old. FEV1 is 70%. I was diagnosed before the age of 1.
W
welshwitch
Guest
I'm neither....was wondering...what % of the CF population has neither? And do we know anything about people without D508?? <img src="i/expressions/face-icon-small-smile.gif" border="0"> All my doctors have ever said was that I was "unusual" for a CF patient.
W
welshwitch
Guest
I'm neither....was wondering...what % of the CF population has neither? And do we know anything about people without D508?? <img src="i/expressions/face-icon-small-smile.gif" border="0"> All my doctors have ever said was that I was "unusual" for a CF patient.
DS diagnosed when he was about 6 days old due to meconium illeus.
Friend of mine's daughter was diagnosed at age 18 months old.
And another friend with two children -- one diagnosed thru newborn screening, so they tested his 3 year old sister who also had CF.
Another friend of mine is 40, had a double lung transplant 10 years ago. Was diagnosed as a toddler.
Friend of mine's daughter was diagnosed at age 18 months old.
And another friend with two children -- one diagnosed thru newborn screening, so they tested his 3 year old sister who also had CF.
Another friend of mine is 40, had a double lung transplant 10 years ago. Was diagnosed as a toddler.
DS diagnosed when he was about 6 days old due to meconium illeus.
Friend of mine's daughter was diagnosed at age 18 months old.
And another friend with two children -- one diagnosed thru newborn screening, so they tested his 3 year old sister who also had CF.
Another friend of mine is 40, had a double lung transplant 10 years ago. Was diagnosed as a toddler.
Friend of mine's daughter was diagnosed at age 18 months old.
And another friend with two children -- one diagnosed thru newborn screening, so they tested his 3 year old sister who also had CF.
Another friend of mine is 40, had a double lung transplant 10 years ago. Was diagnosed as a toddler.
skydiverchic
New member
I have dd508. turning 30 in a few days. My last pfts were 102%. I was diagnosed at birth cause I had 2 older brothers who had cf.
skydiverchic
New member
I have dd508. turning 30 in a few days. My last pfts were 102%. I was diagnosed at birth cause I had 2 older brothers who had cf.
S
shellbuggy
Guest
My 10 yr old is DDF508, she was dx at 15 mnths. If FEV1 is the same as her PFT's, she is at 102. <img src="i/expressions/face-icon-small-smile.gif" border="0"> No CFRD.
S
shellbuggy
Guest
My 10 yr old is DDF508, she was dx at 15 mnths. If FEV1 is the same as her PFT's, she is at 102. <img src="i/expressions/face-icon-small-smile.gif" border="0"> No CFRD.
Asexyblond23
New member
I am 30 and a DD508. I was diagnosed at 8 months old. My normal FEV1 is around 87% but latley its been around 83%. I am also a mom to a non cf 2 year old boy and was blessed it did not affect my health
Asexyblond23
New member
I am 30 and a DD508. I was diagnosed at 8 months old. My normal FEV1 is around 87% but latley its been around 83%. I am also a mom to a non cf 2 year old boy and was blessed it did not affect my health