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We were given a very nice letter by our clinic when Emily had her first cf-related health plan. It summarized the disease and it's need for the various types of tx our kids use at the beginning and then goes on to list the accommodations they suggest for a health plan, 504 or IEP. <br><br>They...

Newborn Screening is done in all states after a baby is born to test for multiple severe diseases. As of a couple years ago CF is now part of the screen in all 50 states. Newborn screening is a program administered by the dept. of health, but the families are billed for it through the...

Newborn Screening is done in all states after a baby is born to test for multiple severe diseases. As of a couple years ago CF is now part of the screen in all 50 states. Newborn screening is a program administered by the dept. of health, but the families are billed for it through the...

Newborn Screening is done in all states after a baby is born to test for multiple severe diseases. As of a couple years ago CF is now part of the screen in all 50 states. Newborn screening is a program administered by the dept. of health, but the families are billed for it through the...

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif"...

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif"...

No, not today Lauren~ but we have a lot of appts in coming few months; one for me and one for my oldest in Sept and nearly every Wed the next few months for Emily. I hope your clinic goes well today! If you see Sarah tell her hello for me. <img src="i/expressions/face-icon-small-smile.gif"...

I don't spend my time sitting around worrying about this; I am one who advocates for taking care of your health, etc every chance I get here and elsewhere. <br> <br>But even you (thinking of Lauren here- whose dh I think works in this field), on threads that discuss drug development tend to...

I don't spend my time sitting around worrying about this; I am one who advocates for taking care of your health, etc every chance I get here and elsewhere. <br> <br>But even you (thinking of Lauren here- whose dh I think works in this field), on threads that discuss drug development tend to...

I don't spend my time sitting around worrying about this; I am one who advocates for taking care of your health, etc every chance I get here and elsewhere. <br> <br>But even you (thinking of Lauren here- whose dh I think works in this field), on threads that discuss drug development tend to...

<div class="FTQUOTE"><begin quote>HMW: I saw my doctor and he gave me a sputum cup and a lab slip. He told me to hang onto it and when I get very sick, give the sputum sample then. I take an antibiotic every day now and that is helping me. When I get in very hot ait it is worse so I am trying...

<div class="FTQUOTE"><begin quote>HMW: I saw my doctor and he gave me a sputum cup and a lab slip. He told me to hang onto it and when I get very sick, give the sputum sample then. I take an antibiotic every day now and that is helping me. When I get in very hot ait it is worse so I am trying...

<div class="FTQUOTE"><begin quote>HMW: I saw my doctor and he gave me a sputum cup and a lab slip. He told me to hang onto it and when I get very sick, give the sputum sample then. I take an antibiotic every day now and that is helping me. When I get in very hot ait it is worse so I am trying...

<div class="FTQUOTE"><begin quote>If they only identified one gene then she is a carrier and does not have the disease.</end quote></div> This is not always true. There are parts of the gene that even genetic sequencing does not examine and test results indicate that a small amount of those with...

<div class="FTQUOTE"><begin quote>If they only identified one gene then she is a carrier and does not have the disease.</end quote> This is not always true. There are parts of the gene that even genetic sequencing does not examine and test results indicate that a small amount of those with CF...

<div class="FTQUOTE"><begin quote>If they only identified one gene then she is a carrier and does not have the disease.</end quote> <br />This is not always true. There are parts of the gene that even genetic sequencing does not examine and test results indicate that a small amount of those with...

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to...

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to...

For now, Vertex is making claims that 'everyone who needs the med will get it', but how long can that possibly last? If insurance companies see them nearly giving it away to those without adequate coverage or otherwise have the means to pay for it, they will kick and scream and find a way to...

Appropriate treatment will definitely only HELP!! In Emily's case we learned very early on that when she got sick prior to her dx, abx were never used appropriately and so she wasn't fully recovering and she was sick again soon afterwards. (I was recognizing this pattern and yanking my hair out...