January 2010
Calgary Alpha Carries Olympic Torch
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Next Telephone Drop-in Meeting is Thursday January 21st
Stephen Brennan, M.S.W., R.S.W. of Brennan Associates will join us. Stephen has maintained a full time private practice in social work for the past 29 years. His practice includes family, marital, and individual counseling, working with adults and children of all ages.
For 27 years, part of his practice has also been to provide social work services to The Hospice of Windsor and Essex County. In that role, he has worked with patients and family members around all areas of adjustment relating to being diagnosed with a life threatening illness, both chronic and terminal. One of the key elements that Stephen speaks about is the importance of the person with the diagnosis to be continually empowered in their patient role as they move along the illness pathway.
The meeting is at the following times:
4:00 pm Pacific Time
5:00 pm Mountain Time
6:00 pm Central Time
7:00 pm Eastern Time
8:00 pm Atlantic Time
8:30 pm Newfoundland Time
In order to participate all you need is a telephone and the toll-free number to call. The toll-free number changed recently, so if you kept the old one it won't work anymore.
Please contact Jim Mundy for the phone number. He can be reached at 1-888-669-4583 or by e-mail at jim.mundy@alpha1canada.ca.
Alpha-1 Canada is a charitable not-for-profit organization, registered with the Canada Revenue Agency.
We gladly accept your contributions by cheque or money order made payable to “Alpha-1 Canada” or by credit card securely through CanadaHelps.org.
We issue tax receipts for donations over $10.
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It is a motivational cliché that when life gives you lemons, make lemonade. John Byrne, 52, a Calgary Alpha and double lung transplant recipient has been served up so many lemons that he could write a book of recipes for lemonade.
When John runs with the 2010 Olympic torch through Exshaw, Alberta on January 20, he won’t be thinking about his own trials and tribulations, rather he’ll be thinking about his donor’s family and hoping to convince the people cheering him on to sign organ donor cards.
Before John was 40 he had difficulty breathing, like so many he chalked it up to being “out of shape.” A doctor diagnosed John with asthma and began treatment. “The puffers he gave me helped a lot, but I was going through them like they were going out of style.” John was afraid he’d be labeled as abusing his new found treatment and began to “shop” for doctors so he could get more prescriptions at different drug stores. It was one of these doctors who suspected alpha-1.
As it turned out John not only had alpha-1, he also had advanced emphysema and his lung function was so low that he needed a lung transplant to survive. After two years of waiting for a suitable match and “dragging oxygen tanks everywhere,” in 2002 John received his double lung transplant.
He has written to his donor’s family twice now and plans to do so again after the torch run. He has to do so through a third party and translators because they don’t speak English and he does not speak French. John never passes up an opportunity to speak publicly about organ donation.
After the transplant one of his doctors told him that at only 44 years of age, he would need to find a new line of work. The doctor suggested John had been given a second chance and that he should find a new career that he would truly enjoy.
John Byrne, a native Newfoundlander, is now an actor. John has appeared in television commercials and is currently working on a short film entitled Mia Maxima Culpa. John is the lead in the film.
You would think that a man who had a double lung transplant eight years ago and launched a successful new career would list one of those events as his best news ever, not John. “My best news is, I am one of 12,000 people chosen to carry the torch in the 2010 Olympic Torch Relay…as the torch gets closer, I get a little more nervous. Life has been good to me ever since my transplant and I told the Olympic committee that organ and tissue donation and organ transplant is one of the reasons I'm carrying the torch.”
On behalf of the Alpha-1 Canada Community we extend our congratulations to John, on his Olympic, Alpha-1 and transplant journeys.
2010 is the Year of the Lung
The year 2010 was declared by the Forum of International Respiratory Societies (FIRS) as the year of the lungs to recognize that hundreds of millions of people around the world suffer each year from treatable and preventable chronic respiratory diseases. “This initiative acknowledges that lung health has long been neglected in public discourses, and understands the need to unify different health advocates behind one purpose, lung health,” said Dr Nils Billo, Chair of the Forum of International Respiratory Societies (FIRS).
The FIRS partners include a collaboration of the world’s leading professional respiratory organizations.
Early last year, the New York Times carried a series of articles on different parts of human body, but forgot the lungs! It is difficult to remain alive without lungs for more than few seconds!
The Declaration signed by the partners of FIRS at the 40th Union World Conference on Lung Health last year read as following:
WE NOTE WITH GRAVE CONCERN THAT:
Hundreds of millions of people around the world suffer each year from treatable and preventable respiratory diseases, including tuberculosis (TB), asthma, lung cancer, H1N1, pneumonia, and chronic obstructive pulmonary disease (COPD) (includes Alpha-1).
WE RECOGNIZE THAT:
Despite the magnitude of suffering and death caused by lung disease, lung health has long been neglected in public discourse and in public health decisions.
For Canadian Alphas, the Year of the Lung presents a great opportunity for us to work together to further build our community and strengthen our relationships with and support for our peers and our medical community. Let’s continue to share our stories, spread awareness about our disease, testing, diagnosis and treatment.
Please make a point of contacting us and encourage your family to do so as well.
Healthy Living Canada
Online Self-management Pilot Project
Is pain, fatigue, stress or other symptoms from your ongoing health condition stopping you from living your life to the fullest?
Would you like to learn ways to get control of your life so you can do the things that matter to you?
You are invited to take part in a free, online self-management pilot program and research study. You need just 2 hours a week for 6 weeks to complete this workshop online. You can do the workshop anywhere you have access to the Internet. The free, online self-management pilot program is only offered in English at this time.
This Stanford University Program is open to anyone in Canada with a chronic condition. Even people that are learning how to use the computer will be able to take part in this user-friendly workshop.
Healthy Living Canada is the online version of the community-based Chronic Disease Self-Management Program (CDSMP).
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HELP WANTED!
The Canadian Organization for Rare Disorders is looking for an Albertan to be a board member for their Alberta Chapter.
Their website is www.raredisorders.ca
If you are intersted or would like to learn more, contact CORD at 877-302-7273 or info@raredisorders.ca.
Most of their meetijngs are held via conference call.
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You will be asked to fill out three questionnaires for the study: one when you sign up, one in 6 months, and one a year after you have finished the workshop. Each questionnaire takes between 20 to 30 minutes.
There will be about 25 people with chronic conditions in the workshop. You will use a screen name during the courseundefinedyour personal information is always protected.
You will be given a free copy of the book Living a Healthy Life with Chronic Conditions when you start the workshop.
Register online at www.healthylivingcanada.org
For more information, email LearnMore@healthylivingcanada.org
This Canada-wide pilot project is sponsored by the Government of Alberta and Alberta Health Services.
On Genetics: With John Mulvihill, M.D.
We came across this interesting interview on the internet. In it, John Mulvihill, MD discusses genetics research.
Since earning an international reputation in the genetics of human cancer 30 years ago, John J. Mulvihill, M.D., has been chief of clinical genetics for the (US) National Cancer Institute, founder of the human genetics department at the University of Pittsburgh and co-founder of the International Genetic Epidemiology Society.
He has directed medical genetics as CMRI/Kimberly and has been professor of pediatrics for the Oklahoma University Health Sciences Center since 1998. Although his research focus is on hereditary and familial factors and on reproduction by cancer survivors as routes to understanding human germ cell mutation, his work as a physician-scientist at Oklahoma University is much more wide-ranging. To read the interview with Dr. Mulvihill click here (the interview is in English). http://www.oumedical.com/body.cfm?id=1696
Our Medical Advisory Board (MAB) is made up of Dr. Ken Chapman (Chairperson), Dr. Diane Cox, Dr. Jean Bourbeau and Dr. Simon Ling.
The following are summaries (abstracts) of recent studies of Alpha-1 and COPD including two by Dr. Jean Bourbeau.
Because of copyright law we can only provide abstracts, if you want to read more check and see if your local library have these journals on their shelves.
Action Plan to enhance self-management and early detection of exacerbations in COPD patients; a multicenter RCT.
Trappenburg JC, Koevoets L, de Weert-van Oene GH, Monninkhof EM, Bourbeau J, Troosters T, Verheij TJ, Lammers JW, Schrijvers AJ.
BMC Pulm Med. 2009 Dec 29;9(1):52. [Epub ahead of print]
ABSTRACT:
BACKGROUND: Early detection of exacerbations by COPD patients initiating prompt interventions has shown to be clinically relevant. Until now, research failed to identify the effectiveness of a written individualized Action Plan (AP) to achieve this. Methods / Design The current multicenter, single-blind RCT with a follow-up period of 6 months, evaluates the hypothesis that individualized AP's reduce exacerbation recovery time. Patients are included from regular respiratory nurse clinics and allocated to either usual care or the AP intervention. The AP provides individualized treatment prescriptions (pharmaceutical and non-pharmaceutical) related to a color coded symptom status (reinforcement at 1 and 4 months). Although usually not possible in self-management trials, we ensured blinding of patients, using a modified informed consent procedure in which patients give consent to postponed information. Exacerbations in both study arms are defined using the Anthonisen symptom diary-card algorithm. The Clinical COPD Questionnaire (CCQ) is assessed every 3-days. CCQ-recovery time of an exacerbation is the primary study outcome. Additionally, healthcare utilization, anxiety, depression, treatment delay, and self-efficacy are assessed at baseline and 6 months. We aim at including 245 COPD patients from 7 hospitals and 5 general practices to capture the a-priori sample size of at least 73 exacerbations per study arm. DISCUSSION: This RCT identifies if an AP is an effective component of self-management in patients with COPD and clearly differentiates from existing studies in its design, outcome measures and generalizability of the results considering that the study is carried out in multiple sites including general practices. Trial Registration NCT00879281.
The Role of Collaborative Self-Management in Pulmonary Rehabilitation.
Bourbeau J., Division of Pulmonary Medicine, McGill University, Montréal, Québec, Canada.
Semin Respir Crit Care Med. 2009 Dec;30(6):700-707. Epub 2009 Nov 25.
Self-management's key feature is to increase patients' involvement and control in their disease and improve their well-being. Self-management is not intended to replace components of patient health care such as medication and pulmonary rehabilitation. We may be enthusiastic about recent results of self-management programs in chronic obstructive pulmonary disease (COPD) patients showing a reduction in hospital admissions. However, being interested only in patients' hospital admissions is overly narrow. The pivotal objective of self-management programs is to change patients' behavior. The success should correspond to the goals of self-management (e.g., acquiring key self-management skills such as problem solving, decision making, early symptom recognition, and taking action) and self-health behaviors (maintaining comfortable breathing, implementing an action plan in the event of an exacerbation, and facilitating exercise maintenance). Pulmonary rehabilitation is increasingly becoming a realistic component of COPD patient management, but it should not stand as an isolated intervention. Pulmonary rehabilitation should be part of an integrated care process and include self-management support (i.e., aiming to achieve a shift from management by the health care provider to management by the patients themselves, which implies structural behavior change). Changing patient behavior and ensuring maintenance are complex processes and require time. © Thieme Medical Publishers.
Update: Alpha-1-Antitrypsin Deficiency.
Vogelmeier C, Hamacher J, Steveling H, Steinkamp G. Klinik für Innere Medizin mit Schwerpunkt Pneumologie, Universitätsklinikum Giessen und Marburg, Standort Marburg, Deutschland.
Pneumologie. 2009 Nov 25. [Epub ahead of print]
The time delay between the start of respiratory symptoms and the correct diagnosis of alpha-1-antitrypsin (AAT) deficiency is often 6 to 8 years. Most patients are misdiagnosed as having COPD or asthma. Recent estimates suggest that only 15 % of patients have already been identified. The PiZZ genotype leads to severely decreased AAT serum concentrations, and is associated with a high risk of pulmonary emphysema. Disease manifestation is earlier in smokers than in non-smokers. Since cigarette smoke is able to reduce AAT activity by a factor of 2000, it can accelerate the progression of emphysema. Patients are therefore recommended to stop smoking. The EXACTLE study assessed the development of emphysema by means of CT densitometry in 77 patients with severe AAT deficiency over a period of 2.5 years. CT densitometry was able to detect the progressive loss of lung tissue, and it was found to be more sensitive than pulmonary function or quality of life variables. With weekly intravenous supplementation of alpha-1-antitrypsin, emphysema progressed more slowly compared to placebo (albumin) infusions. In Germany, of about 900 patients are currently receiving supplementation therapy with human AAT. The treatment is well tolerated and well accepted by the patients. Symptomatic treatment consists of long- and short-acting beta-agonists, anticholinergic bronchodilators, and inhaled corticosteroids. Alpha-1 centres provide particular expertise, and it is recommended that every patient should be seen in one of these specialised outpatient clinics. © Georg Thieme Verlag KG Stuttgart • New York.
Vitamin D Deficiency is Highly Prevalent in COPD and Correlates with Variants in the Vitamin D Binding Gene.
Janssens W, Bouillon R, Claes B, Carremans C, Lehouck A, Buysschaert I, Coolen J, Mathieu C, Decramer M, Lambrechts D. Katholieke Universiteit Leuven - Division of Respiratory Medicine, Belgium;
Thorax. 2009 Dec 8. [Epub ahead of print]
INTRODUCTION: Vitamin D deficiency has been associated with many chronic illnesses, but little is known about its relation with chronic obstructive pulmonary disease (COPD). OBJECTIVES: We measured serum 25-hydroxyvitamin D levels (25-OHD) in 414 (ex)-smokers older than 50 years and assessed the link between vitamin D status and presence of COPD. The rs7041 and rs4588 variants in the vitamin D binding gene (GC) were genotyped and their effects on 25-OHD levels were tested. RESULTS: In COPD patients 25-OHD levels correlated significantly with FEV1 (r = 0.28, p<0.0001). Compared to 31% of the smokers with normal lung function, as much as 60% and 77% of GOLD stage 3 and 4 patients exhibited deficient 25-OHD levels lower than 20ng/ml (p<0.0001). Additionally, 25-OHD levels were reduced by 25% in homozygous carriers of the rs7041 at-risk T-allele (p<0.0001). This correlation was found to be independent of COPD severity, smoking history, age, gender, body mass index, corticosteroid intake, seasonal variation and rs4588 (p<0.0001). Notably, 76% and 100% of GOLD stage 3 and 4 patients homozygous for the rs7041 T-allele, exhibited 25-OHD levels lower than 20ng/ml. Logistic regression corrected for age, gender and smoking history, further revealed that homozygous carriers of the rs7041 T-allele exhibited an increased risk for COPD (OR=2.11; 95% CI: 1.20-3.71; p=0.009). CONCLUSION: Vitamin D deficiency occurs frequently in COPD and correlates with severity of COPD. Our data warrant vitamin D supplementation in patients with severe COPD, especially in those carrying at-risk rs7041 variants.
If you know of any research, articles or other publications that would be of interest to our readers please contact us.
And don’t forget if there is a topic or speaker you think would be helpful for others to hear at one of our support group meetings please let us know.
Our website is continuously updated with useful information for Alphas and their caregivers as well as news on promising research. Make a habit of checking our website regularly so you won’t miss out on exciting updates and always read our monthly newsletter from top to bottom.
Help us spread awareness by forwarding our newsletters to your family and friends.
Alpha-1 Canada - Making a difference in the lives of Alphas
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This newsletter is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this newsletter to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder.
Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions. |