Complementary Symptom Management for Cystic Fibrosis (for healthcare professionals)

Complementary Symptom Management for Cystic Fibrosis

By Tatjana Djakovic M.Sc

Co-authors Paul Quinton PhD, David M. Orenstein M.D., John Mark M.D., Leonid Ber M.D.

“This book produced by the Natural Health Research Institute (NHRI) and Tracie Lawlor Trust for cystic fibrosis (TLT4CF) on complementary symptom management for Cystic Fibrosis (CF) is meant to bring together some of the most widely used complementary treatments for CF and establishes a solid evidence base for the expanding role of alternative approaches within the integrative medical field. The vast and varying complementary and integrative health field categories can make it daunting for a healthcare professional to have adequate ease to access evidence based integrative medicine easily.
This booklet summaries the evidence into a systems approach addressing the most commonly affected organs in those with CF and provides some complementary management options which may be effective. The booklet also ventures into CF related diabetes occurring more often and becoming a significant burden within the CF community.
Mental health problems, which often occur in those with debilitating disease, are also discussed in relation to those with CF. The booklet also notes where there is a lack of evidence in certain areas and is keen to acknowledge this fact while providing a clear and concise evidence based approach to the reader.

Also includes a upper safety limit table on all discussed herein.”

Where to buy worldwide on kindle please follow the link listed and add to cart

https://www.amazon.co.uk/dp/B07CFTSD4J    (Kindle – Ireland/UK/rest of the world).

 

For USA customers please go here Link: 

https://www.amazon.com/Complementary-Symptom-Management-Cystic-Fibrosis/dp/0692904018/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=  for paper back edition (USA only).

 

If you would like a paper back copy (outside of USA) please follow instructions below:

Go to “Just Giving” here: https://goo.gl/lwn5bM and donate as applicable.

 

Price €30 for the book, postage within Ireland €3 rest of the world €5.50 as it currently stands.
We cannot post or sell to the USA as NHRI sell the book there.
For a paperback make a donation through “Just Giving” here

  • €33 donation for postage within Ireland.
  • €35.50 donation for postage to rest of the world (excluding USA)

Include your name and be sure NOT to click “hide donation amount”.

Screenshot your donation, then mail us on our Facebook “Tracie Lawlor Trust for Cystic Fibrosis” or send an email to info (((AT)) tracielawlortrust.com please remove brackets and use the symbol for “at” before emailing.
Include a screenshot of your donation, name and your mailing address.

 

As all the tools we use don’t cost us and we are all volunteers this is why it is slightly awkward but saves on admin!! So again donations received go back into C.F. assistance, awareness and CAM research.

Research into Acupuncture for the Treatment of Cystic Fibrosis in Teenagers and Young Adults

Up to 59% of patients with Cystic Fibrosis (CF) experience

Brenda Golianu, MD, Associate Professor of Anesthesiology, Perioperative & Pain Medicine
Brenda Golianu, MD, Associate Professor of Anesthesiology, Perioperative & Pain Medicine

significant pain and discomfort that may decrease their quality of life. The research we are conducting at Stanford University School of Medicine and Lucile Packard Children’s Hospital Stanford, generously funded by the Tracie Lawlor Trust for CF, is investigating whether acupuncture can help teens and young adults with CF improve their pain and sleep. Our overall goal is to determine if acupuncture is a safe, feasible and effective integrative medicine approach that may improve CF patients’ pain and quality of life.

We, Dr. Brenda Golianu, an anesthesiologist, and Dr. Ann Ming Yeh, a gastroenterologist, are leading this pilot study, with a larger cross-disciplinary team. We are both physicians and certified medical acupuncturists, and have completed fellowships in Integrative Medicine at the University of Arizona. Medical acupuncture has been used for many years to help alleviate chronic pain in various parts of the body. However, few studies have been conducted to examine the efficacy of medical acupuncture in reducing the pain or other symptoms of discomfort experienced by teens and young adults with CF.

We are investigating whether a regimen of one medical acupuncture treatment per week for four weeks could be effective in improving young CF patients’ pain, sleep, and quality of life. Using a randomized placebo-controlled crossover study design, study participants were assigned to initially receive either traditional medical acupuncture or sham (pretend) acupuncture. After the first cycle of true or sham treatment, the patients had a 2-week waiting period. Then those who had received sham acupuncture received true acupuncture, and those who had received true acupuncture received sham acupuncture. Thus, all participants had a chance to benefit from the therapeutic approach.

To help us determine acupuncture’s efficacy in improving CF patients’ pain, we measured each participant’s pain before and after each treatment and on each day of the study between treatments. We also measured participants’ sleep duration and sleep quality. To more broadly evaluate important quality of life measures, such as fatigue and energy level, we used the Cystic Fibrosis Quality of Life Questionnaire. We are now in the data analysis phase and anticipate our pilot study’s completion at the end of summer. We greatly appreciate the support of the Tracie Lawlor Trust for CF and its many wonderful supporters and hope our work will contribute to the well-being of young people with CF.

Ann Ming Yeh, MD, Assistant Professor of Pediatrics–Gastroenterology
Ann Ming Yeh, MD, Assistant Professor of Pediatrics–Gastroenterology

 

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*The opinion(s) expressed herein are the sole opinion of the author are not necessarily the opinion(s) of the Tracie Lawlor Trust. Always consult your physician and healthcare team before making any changes to your medical regime. For information purposes only not to be considered medical advice. Please see Disclaimer

– See more at: http://www.tracielawlortrust.com/category/complementary-intergrated-medicine/#sthash.lRiauVIk.dpuf

TLT co-funded researcher at Harvard Uni tackles Pseudomonas aeruginosa resistance

 

By Sara Leiman post graduate student at Harvard University, USA

Pseudomonas aeruginosa infections are the leading cause of mortality for cystic fibrosis (CF) patients . Work over the past decade has demonstrated that the danger of P. aeruginosa infections rests not only in this bacterium’s genetic resistance to many antibiotics, but also in its propensity to live in a biofilm.  P. aeruginosa biofilms comprise a mixture of metabolically active and dormant cells encased by a self-produced exopolymer matrix.  The biofilm matrix has a drastic therapeutic consequence, magnifying the minimum inhibitory concentrations of antibiotics as much as 1000-fold when compared with free-living P. aeruginosa.  Improved strategies to treat and clear chronic P. aeruginosa infections must therefore overcome this protective exopolymeric barrier.  Importantly, while many factors contributing to P. aeruginosa have been identified – including quorum sensing molecules, the secondary messenger cyclic-di-GMP, and genes responsible for making matrix – the mechanisms by which these diverse components interact to establish a biofilm state are largely mysterious.

            To address the gaps in the current understanding of P. aeruginosa biofilm development, our studies have focused on uncovering novel components and interactions involved in Pseudomonas aeruginosa biofilm formation, maintenance, and disassembly.  Our approach has been unique in that we developed and implemented a new screen, based on biofilm morphology, which lends itself to the recognition of subtle biofilm phenotypes.  We conducted a transposon mutagenesis screen using a P. aeruginosa strain background in which the biofilm-inhibitory gene amrZ was deleted.  We have completed collecting and analyzing the biofilm morphologies of this transposon library and know the locations of the transposon insertions for the 62 mutants we selected using this screen. 

            The results of our screen include well-known biofilm-related genes, thus validating our method.  Our results also include uncharacterized genes as well as annotated genes whose roles in biofilm formation are unclear.  For both of these classes of results, we have constructed strains with directed mutations (deletions, complementations, and/or overexpressions) to verify the biofilm functions of the loci we have uncovered.  The biofilm phenotypes of these genes have been confirmed by a qualitative morphological screen as well as by a quantitative Congo Red-binding assay, a standard read-out of structured biofilm formation.

Sara Leiman (BSc) working at her lab bench, under the supervision of Professor Richard M. Losick at the department of molecular and cellular biology, Harvard University, USA

            Our group is currently focused on uncovering the mechanisms of action of two uncharacterized genes identified through our transposon mutagenesis screen.  The first gene encodes a putative TetR transcriptional repressor that has been previously implicated in quorum sensing.  Uncovering the mechanism of this protein may not only reveal its specific role in biofilm formation, but it may also elucidate how quorum sensing components may be leveraged for future anti-biofilm treatments.

            Our second gene of interest is a hypothetical protein with structural similarity to a known P. aeruginosa cyclic-di-GMP-binding protein.  Cyclic-di-GMP levels are positively correlated with biofilm formation, though the precise signaling pathways by which this secondary messenger regulates biofilm formation remain unknown.  By identifying the localization and interaction partners of this putative cyclic-di-GMP-binding protein, we may be able to shed more light on the mechanisms driving biofilm formation in P. aeruginosa and find new targets for anti-biofilm compounds.

Our future directions are targeted to understanding the biochemistry of the two aforementioned genes as well as several other candidates from our transposon mutagenesis screen.  Among these efforts, we plan to measure and compare the intracellular cyclic-di-GMP levels of our mutants.  We also plan to implement pull-down assays, followed by mass spectrometry, to identify protein-protein interactions and complexes.  Overall, our goal is to combine our genetic manipulations of P. aeruginosa with biochemical analyses to yield a more refined picture of the P. aeruginosa biofilm formation process and facilitate the development of treatments for P. aeruginosa infections.

Further reading:
1. Kirov et al. (2007) Microbiology. 153, 3264-74.    
2. Foweraker. (2009) Br Med Bull. 89, 93-110.
3. Hill et al. (2005) J Clin Microbiol. 43, 5085-90.
4. Ellis T.E. et al. (2010) Infec and Immunity. 78(9), 3822-3831.
5. The Leeds Method of Management (2008) Intravenous antibiotics and Pseudomonas aeruginosa. Available from http://www.cysticfibrosismedicine.com
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Sara’s work was co-funded by the Tracie Lawlor Trust and Natural Health Research Institute . For more information on our ongoing research http://www.tracielawlortrust.com/research/

Patient’s Assistance Fund

Tracie Lawlor Trust Patient Assistance fund was set up to directly help Cystic Fibrosis (CF) patients avail of integrative treatments. The fund has helped purchase treatments for CF’s ranging from exercise bikes, gym memberships, to acupuncture and supplements, all of which have aided in improving the quality of life for people with CF. Recently the TLT4CF have purchased a state of the art bike from Italy at cost with the very kind help of Pat Whitney and Peter Thatcher.

William Bresnan receiving his state of the art bike from TLT4CF

William Bresnan a recent transplant recipient was asked to take part in the world transplant games this year in South Africa, with disciplines of cycling and swimming however he was unable to afford a proper racing bike and train with it. He had applied to the national CF charity for gym membership but was refused and asked to wait a year due to receiving it a number of times, so he did and was refused again and was told a meeting on rules was going to take place. He then wrote a letter explaining what happened to us and how much it would mean to him, as we understand the importance of exercise for maintaining health post transplant and it is important to show inspiration to other CF’s, show them it can be done, it may be hard but this is an example with some belief and hard work, we were able to not only get a state of the art racing bike but fund treatment with a Physiotherapist in his local area and he has been flying it ever since! This is due to the many, many kind people of Wexford that have made this fund possible, We look forward to seeing him at the transplant world games next year, flying the Irish flag proudly! This would not be possible without people like you, so thank you, as any donation helps, as we do not take a wage nor salary so all your donations directly/indirectly help CF patients and further research.

This was made possible through the Patients Assistance Fund (click link for full list), this is one of many stories of how the money you donate to us has being directly used to help CF patients right now with their needs, thank you so much and remember we don’t waste your donations on wages/salaries/allowances/investments etc. the money you give is used as it should be. Please consider us in any fundraising activity in the future to help us, help many more CF’s and continue to help those that have availed of the fund thus far. 

Groundbreaking research could improve lives of people with Cystic Fibrosis

Groundbreaking new research into the potential health benefits of a martial art could help
improve the lives of youngsters who have one of the most common hereditary lifethreatening diseases in Britain and Ireland.
The study will explore how tai chi can help people with cystic fibrosis to manage their condition and enjoy a better quality of life.
Professor Nicola Robinson, an academic Press Release