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New Vitamin D Guidelines for Cystic Fibrosis Patients – Aug 2012

A copy of a blog post at http://www.ourcfmattershawaii.com/
Hi all,

As a result of the natural effects that cystic fibrosis has on the body, with regard to lung infections and the inability of cystics to absorb certain nutrients, those with CF typically carry insufficient levels of vitamin D. Earlier this year, the U.S. Cystic Fibrosis Foundation (CFF) updated their recommended guidelines of vitamin D intake and screening, which emphasizes the prevention of this vitamin’s deficiency in patients. This update, together with causes of low vitamin D levels in cystics, is discussed in today's posting.

There are several factors which result in vitamin D deficiencies in those with cystic fibrosis, ranging from pancreatic enzyme insufficiency that affects between 90-95% of CF patients, to late stage puberty, to the lung conditions that are common among those in the cystic fibrosis community. In addition, since vitamin D is fat soluble, and since cystics tend to have less fat body fat to store this vitamin, this issue of the deficiency is exacerbated http://www.hindawi.com/journals/ije/2010/218691/. The importance for proper levels of vitamin D in cystics is accentuated by a finding noted in the previous website, which shows a correlation between levels of this vitamin and decreased FEV1, an important measure of lung function.

A study published by Johns Hopkins Children Center in 2008 stated that of 262 CF patients included in the trial, nearly half were vitamin D deficient http://www.hopkinschildrens.org/Children-Cystic-Fibrosis-Vitamin-D-Needs.aspx#. The report also showed that the level of deficiency varied by the seasons, due to the differing patient exposure to sunlight during those times. It therefore follows that the biggest vitamin D deficiencies among patients were noted in the fall, with 83% of patients showing this characteristic, while only 41% realized this setback during the summer.

In studies similar to those performed by Johns Hopkins, it was demonstrated that previous guidelines to assist in the maintenance of vitamin D levels for cystics set by CFF were not adequate. As a result, in March 2012, the CF Foundation updated their vitamin D guidelines to emphasize prevention of the vitamin deficiency http://news.emory.edu/stories/2012/03/jj_vitamind_guidelines_fystic_fibrosis/index.html. This is in contrast to the past, where, according to a source in the previous link, the recommended guidelines suggested only dosing the patient with vitamin D when levels were low. However, new guidelines spell out an approach to increase intake of this vitamin at all times, whether the patient is deficient or not, and also recommend age-specific vitamin D intake for cystics, which can be found at the Foundation's website http://www.cff.org/UploadedFiles/treatments/Therapies/Nutrition/Vitamins/Vitamin-D-and-CF.pdf.

Further, it is advised that cystics be screened annually for their vitamin D status, preferably at the end of the winter.
Lastly, it is encouraged by the CF Foundation that the intake of vitamin D is in the form of D3, versus the previously recommended D2.

Live life.

A brief video introducing this posting can be seen on YouTube at http://www.youtube.com/watch?v=W5fQ6l8ahU0&feature=plcp.

BTW - If you would like me to research and post any topic of interest regarding Cystic Fibrosis, please feel free to e-mail your suggestions to me at rod at ourcfmattershawaii.com.
I will do my best to place your idea into my queue of topics to cover on this site. Thanks for your feedback.


See also VitaminDWiki

See also web

  • A Tale of Two Drugs MIT Technology Review Oct 2013
    FDA approved Kalydeco for cystic fibrosis, after just three months of review. Costs $294,000 a year.
  • Hypovitaminosis D in Patients with Cystic Fibrosis: A Cross-Section Study in South Brazil Dec 2013
    After multivariate analysis, body mass index, and hospitalization in the last month remained significantly associated with serum vitamin D levels
    Vitamin D insufficiency is still a problem in cystic fibrosis patients, even in those receiving supplementation
    Comment by VitaminDWiki: possible reasons for continuing insufficiency: not enough Vitamin D; need cofactors such as Magnesium, Omega-3, and Vitamin K2

VitaminDWiki guesses that Vitamin D costing < $10/year may be better than Kalydeco

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