Tuesday, September 30, 2008
Help With Utilities
The single mother of a teen-aged CF patient was recently laid off of her job. She has found new employment but had not yet received her first paycheck. Their power had been disconnected, making it impossible for the patient to do her nebulizer and vest treatments. Reaching Out paid the power bill for the family.
Young Patient Needing Help
A 16 year old CF patient is not able to live with her parents due to their cigarette smoking in the house. This makes it very difficult for her to breathe in this unhealthy environment. She is trying to take care of her self as well as possible, but has problems being able to pay for her medications. Reaching Out has helped with the payment of some of her medications.
Friday, September 26, 2008
Scientists use pigs to try to beat cystic fibrosis
Scientists use pigs to try to beat cystic fibrosis
By Will Dunham Thu Sep 25, 2:45 PM ET
WASHINGTON (Reuters) - U.S. scientists have created pigs that appear to develop cystic fibrosis just as people do, a step they hope will accelerate efforts to tackle the disease.
Writing in the journal Science on Thursday, scientists at the University of Iowa and the University of Missouri said they created genetically engineered piglets with the same mutation that causes cystic fibrosis in people.
Studying how the disease unfolds in these pigs may provide insights into cystic fibrosis that thus far have eluded scientists and could point toward new treatments or maybe even a cure, said Dr. Michael Welsh of the University of Iowa.
People get CF when they inherit two mutated copies of a gene called CFTR, which was pinpointed as the cause in 1989. The disease causes mucus to accumulate and clog some of the organs in the body, especially the lungs and pancreas.
The Cystic Fibrosis Foundation, which helped fund the study, said about 70,000 people worldwide, including 30,000 people in the United States, have CF. People with the disease can expect to live to about age 37.
Scientists create animal "models" of a disease in order to perform experiments that would not be possible with people. Mice with the genetic abnormality that causes cystic fibrosis have been developed, but the disease presents itself very differently in these rodents than in people.
"Unfortunately, the mice leave something to be desired," Welsh, who helped lead the study, said in a telephone interview.
"They don't get the pancreatic disease like people with CF get. They don't get the lung disease like people with CF get. They don't get the intestinal disease like people with CF get. There's been many questions that can't be answered," he added.
"The onset of these problems is difficult to track down in humans because sometimes they happen before birth or sometimes they happen silently," added Christopher Penland of the foundation.
This is the latest example of pigs used for human medical needs. For example, cardiac patients can get pig heart valves.
The scientists developed pigs with cystic fibrosis because their lungs have many characteristics of human lungs.
"Right now, if you want to do experiments to find treatments or therapies for the lung disease that is fatal for people with CF, you would have to experiment on kids that have CF," Randy Prather of the University of Missouri added.
The disease in pigs closely mimicked the initial stages of the disease seen in people. The scientists are waiting for them to develop lung disease typical of CF "so we can start experimenting in ways that have never been possible," Prather said in a statement.
By Will Dunham Thu Sep 25, 2:45 PM ET
WASHINGTON (Reuters) - U.S. scientists have created pigs that appear to develop cystic fibrosis just as people do, a step they hope will accelerate efforts to tackle the disease.
Writing in the journal Science on Thursday, scientists at the University of Iowa and the University of Missouri said they created genetically engineered piglets with the same mutation that causes cystic fibrosis in people.
Studying how the disease unfolds in these pigs may provide insights into cystic fibrosis that thus far have eluded scientists and could point toward new treatments or maybe even a cure, said Dr. Michael Welsh of the University of Iowa.
People get CF when they inherit two mutated copies of a gene called CFTR, which was pinpointed as the cause in 1989. The disease causes mucus to accumulate and clog some of the organs in the body, especially the lungs and pancreas.
The Cystic Fibrosis Foundation, which helped fund the study, said about 70,000 people worldwide, including 30,000 people in the United States, have CF. People with the disease can expect to live to about age 37.
Scientists create animal "models" of a disease in order to perform experiments that would not be possible with people. Mice with the genetic abnormality that causes cystic fibrosis have been developed, but the disease presents itself very differently in these rodents than in people.
"Unfortunately, the mice leave something to be desired," Welsh, who helped lead the study, said in a telephone interview.
"They don't get the pancreatic disease like people with CF get. They don't get the lung disease like people with CF get. They don't get the intestinal disease like people with CF get. There's been many questions that can't be answered," he added.
"The onset of these problems is difficult to track down in humans because sometimes they happen before birth or sometimes they happen silently," added Christopher Penland of the foundation.
This is the latest example of pigs used for human medical needs. For example, cardiac patients can get pig heart valves.
The scientists developed pigs with cystic fibrosis because their lungs have many characteristics of human lungs.
"Right now, if you want to do experiments to find treatments or therapies for the lung disease that is fatal for people with CF, you would have to experiment on kids that have CF," Randy Prather of the University of Missouri added.
The disease in pigs closely mimicked the initial stages of the disease seen in people. The scientists are waiting for them to develop lung disease typical of CF "so we can start experimenting in ways that have never been possible," Prather said in a statement.
Tuesday, September 23, 2008
Promising New Approach To Treating Cystic Fibrosis Lung Infection
Researchers at the University of Calgary have found a new method of fighting severe lung infections in people with cystic fibrosis (CF). These findings are published in Proceedings of the National Academy of Science USA, this week. Communities of bacteria grow in the lungs of people with CF. Pseudomonas aeruginosa is a common bacterium found in these communities and is often associated with severe lung infections. Pseudomonas represents a constant and ever present threat to the health of people with CF. Dr. Michael Surette, Professor of Medicine at the University of Calgary, and his team, working with Dr. Harvey Rabin and the Calgary Adult CF Clinic have found that a group of previously overlooked and often undetected bacteria in these communities, the Streptococcus milleri group (SMG), compounds the danger of Pseudomonas aeruginosa. Currently, doctors have treated Pseudomonas with antibiotics, however, the Pseudomonas family of bacteria is increasingly becoming resistant to treatment. Dr. Surette's research shows clinical benefit simply by treating SMG, and thereby disrupting the bacterial community. Doctors at the Calgary Adult CF Clinic (Foothills Hospital) have already tested this new approach successfully, with patients admitted to hospital with severe lung infections. People treated with SMG-targeted therapies quickly returned to a stable state. "This is important new information," said Dr. Michael Surette. "In our small patient group, the laboratory findings have been used to guide treatment, with positive results." The research project, funded by the Canadian Cystic Fibrosis Foundation, has led to a real alternative to combating severe lung infections in persons with CF. Early study results show that it may also be a treatment option for individuals with chronic lung infections unrelated to CF. "These findings underline the importance of supporting CF research," said Cathleen Morrison, Chief Executive Officer of the Canadian Cystic Fibrosis Foundation. "In this case, laboratory research has been translated rapidly into actual treatment, helping people with cystic fibrosis fight back against aggressive infections." ----------------------------Article adapted by Medical News Today from original press release.
Wednesday, September 10, 2008
Special Milestones
Eighth Anniversary of Susan Burroughs’ new lungs,
her 48th birthday
and her 20th wedding anniversary!!
Donald Cross’ 36th birthday
Honoring Susan for her courage and ongoing gift to others
her 48th birthday
and her 20th wedding anniversary!!
Donald Cross’ 36th birthday
Honoring Susan for her courage and ongoing gift to others
Traveling With Cystic Fibrosis
In-Depth Education
Thomas J. Newton, RCP, RRT For someone with a chronic lung disease like cystic fibrosis (CF), traveling can be fun and exciting. Unfortunately, it might also include the wrong kind of excitement. Here are some examples of excitement that you could do without:
Running out of your medication
Not having a place to plug in your compressor
Getting short of breath at higher elevations or in an airplane
Not having any oxygen on the plane because you forgot to call the airlines ahead of time to arrange for it
Not knowing where to go if you have an emergency
Preparation Is the KeyWhether you travel by car, boat, train, or plane, being prepared is the key. Preparation is important not only for long trips lasting several days or weeks but also for shorter excursions lasting only one day.Before embarking on a trip, be sure to talk with your healthcare provider and cystic fibrosis healthcare team. They can help you plan your medical care during your trip.If you are planning to travel and are unsure of your lung function, check with your healthcare provider. This is especially important if you plan to fly or travel to higher elevations, such as the mountains. People with altered or impaired lung function may have more symptoms at higher elevations, especially if they already use oxygen or have poor exercise tolerance.Normal Lung Function and Normal Exercise ToleranceIf you have normal lung function and normal exercise tolerance:
Take more than enough medications to get you through your trip.
Ask your doctor if you can substitute metered-dose inhalers (MDIs) with spacers for some of the inhaled medications that you normally take using a nebulizer. Metered-dose inhalers may be more practical, since you may not always have access to an electrical outlet for your nebulizer while you are traveling. Common medicines that come in inhaler form are albuterol (Proventil or Ventolin), cromolyn (Intal), ipratropium (Atrovent), and inhaled steroids.
Ask your healthcare provider if you can be off Pulmozyme (rhDNase) and/or TOBI (tobramycin solution for inhalation) for the duration of your trip, or at least for parts of it.
Ask your healthcare provider about trying a PEP (positive expiratory pressure) mask or a Flutter or Acapella mucus clearance device to clear your airways. These devices are easy to learn and are very portable. They can also be used in a car, plane, train, or boat without the assistance of another person.
Make sure that battery-powered machines are right for you. Battery-powered machines work well but are a bit slower and are more expensive than standard electrical devices. Also, not all insurance policies pay for them. Important: If you are going to purchase a battery-powered model, check how long the battery lasts on a full charge. This will give you an idea of how many treatments you can get out of a charged battery. This is important if you are taking multiple medications, such as Pulmozyme and TOBI.
Impaired Lung Function and/or Poor Exercise ToleranceIf you have impaired (moderate to severe) lung function and/or poor exercise tolerance:
Follow the instructions noted above.
Let your healthcare provider know about your trip at least one month in advance.
Find out if you will need oxygen while traveling by airplane or when visiting higher elevations. Your healthcare provider may want to test your oxygen needs before you take the trip.
Check with your oxygen supplier to help coordinate oxygen delivery in connecting cities and at your final destination.
Bring extra medication with you. Trips can be delayed because of bad weather or missed connecting flights.
Your Medical History Checklist Keep a copy of your medical history with you in case of any unplanned trips to an emergency room or hospital. Your medical history should include:
Your diagnosis -- cystic fibrosis, as well as any other medical problems you may have, such as diabetes or asthma
All current medications, including TOBI (even if you are off cycle) and oxygen (liters/minute)
Last chest x-ray report
Information about your central intravenous line, portacath, or Broviac (if you have one)
Information about your G-tube or button (if you have one)
Last sputum culture
Last pulmonary function test
Information indicating whether you have ever coughed up blood and the last time you did
Information indicating whether you have ever had a pneumothorax
The names and phone numbers of all your healthcare providers
Ask your CF team to provide you with the addresses and telephone numbers of CF centers along the way or close to where you will be staying. This information may come in handy in the event you need to consult a CF specialist while you are on your trip.Bon Voyage! Letting your CF team know about your trip well in advance can make traveling easier. That will give them enough time to help you prepare for your trip. And it will give you more time to have fun while you are away.This article was written by Thomas J. Newton, RCP, RRT, a clinical specialist in pediatric respiratory care and a CF team member at a hospital for children. It was reviewed in 2007 by James W. Wallace, MD.ReferencesBreathin’ Easy: A Guide for Travelers With Pulmonary Disabilities. Available at: http://www.oxygen4travel.com. Accessed January 29, 2004. California Thoracic Society and the American Lung Association of California. Safe Flying For People With Lung Disease. 2002. Available at: http://www.thoracic.org/chapters/california_adobe/safeflying.pdf. Accessed January 29, 2004.
Top of Page
Thomas J. Newton, RCP, RRT For someone with a chronic lung disease like cystic fibrosis (CF), traveling can be fun and exciting. Unfortunately, it might also include the wrong kind of excitement. Here are some examples of excitement that you could do without:
Running out of your medication
Not having a place to plug in your compressor
Getting short of breath at higher elevations or in an airplane
Not having any oxygen on the plane because you forgot to call the airlines ahead of time to arrange for it
Not knowing where to go if you have an emergency
Preparation Is the KeyWhether you travel by car, boat, train, or plane, being prepared is the key. Preparation is important not only for long trips lasting several days or weeks but also for shorter excursions lasting only one day.Before embarking on a trip, be sure to talk with your healthcare provider and cystic fibrosis healthcare team. They can help you plan your medical care during your trip.If you are planning to travel and are unsure of your lung function, check with your healthcare provider. This is especially important if you plan to fly or travel to higher elevations, such as the mountains. People with altered or impaired lung function may have more symptoms at higher elevations, especially if they already use oxygen or have poor exercise tolerance.Normal Lung Function and Normal Exercise ToleranceIf you have normal lung function and normal exercise tolerance:
Take more than enough medications to get you through your trip.
Ask your doctor if you can substitute metered-dose inhalers (MDIs) with spacers for some of the inhaled medications that you normally take using a nebulizer. Metered-dose inhalers may be more practical, since you may not always have access to an electrical outlet for your nebulizer while you are traveling. Common medicines that come in inhaler form are albuterol (Proventil or Ventolin), cromolyn (Intal), ipratropium (Atrovent), and inhaled steroids.
Ask your healthcare provider if you can be off Pulmozyme (rhDNase) and/or TOBI (tobramycin solution for inhalation) for the duration of your trip, or at least for parts of it.
Ask your healthcare provider about trying a PEP (positive expiratory pressure) mask or a Flutter or Acapella mucus clearance device to clear your airways. These devices are easy to learn and are very portable. They can also be used in a car, plane, train, or boat without the assistance of another person.
Make sure that battery-powered machines are right for you. Battery-powered machines work well but are a bit slower and are more expensive than standard electrical devices. Also, not all insurance policies pay for them. Important: If you are going to purchase a battery-powered model, check how long the battery lasts on a full charge. This will give you an idea of how many treatments you can get out of a charged battery. This is important if you are taking multiple medications, such as Pulmozyme and TOBI.
Impaired Lung Function and/or Poor Exercise ToleranceIf you have impaired (moderate to severe) lung function and/or poor exercise tolerance:
Follow the instructions noted above.
Let your healthcare provider know about your trip at least one month in advance.
Find out if you will need oxygen while traveling by airplane or when visiting higher elevations. Your healthcare provider may want to test your oxygen needs before you take the trip.
Check with your oxygen supplier to help coordinate oxygen delivery in connecting cities and at your final destination.
Bring extra medication with you. Trips can be delayed because of bad weather or missed connecting flights.
Your Medical History Checklist Keep a copy of your medical history with you in case of any unplanned trips to an emergency room or hospital. Your medical history should include:
Your diagnosis -- cystic fibrosis, as well as any other medical problems you may have, such as diabetes or asthma
All current medications, including TOBI (even if you are off cycle) and oxygen (liters/minute)
Last chest x-ray report
Information about your central intravenous line, portacath, or Broviac (if you have one)
Information about your G-tube or button (if you have one)
Last sputum culture
Last pulmonary function test
Information indicating whether you have ever coughed up blood and the last time you did
Information indicating whether you have ever had a pneumothorax
The names and phone numbers of all your healthcare providers
Ask your CF team to provide you with the addresses and telephone numbers of CF centers along the way or close to where you will be staying. This information may come in handy in the event you need to consult a CF specialist while you are on your trip.Bon Voyage! Letting your CF team know about your trip well in advance can make traveling easier. That will give them enough time to help you prepare for your trip. And it will give you more time to have fun while you are away.This article was written by Thomas J. Newton, RCP, RRT, a clinical specialist in pediatric respiratory care and a CF team member at a hospital for children. It was reviewed in 2007 by James W. Wallace, MD.ReferencesBreathin’ Easy: A Guide for Travelers With Pulmonary Disabilities. Available at: http://www.oxygen4travel.com. Accessed January 29, 2004. California Thoracic Society and the American Lung Association of California. Safe Flying For People With Lung Disease. 2002. Available at: http://www.thoracic.org/chapters/california_adobe/safeflying.pdf. Accessed January 29, 2004.
Top of Page
Drew’s Views
My name is Drew and I’m 22 years old with cystic fibrosis. Although I have CF, CF doesn’t have me. If for some reason my picture is not self-explanatory, I am a girl with a boy’s name.
I was diagnosed with cystic fibrosis when I was two years old after my cousin, Bess, was born and diagnosed. My parents had taken me to doctors to try to figure out what was wrong, but the doctors said I would “grow out of it.” I’m still waiting…
Aside from having CF, I lead a relatively normal life. Like most people, I put hot sauce on everything, refuse to lick envelopes and set my alarm to wake up on a :22 or :44. This constitutes as normal, right?!
Growing up, I was very involved in soccer, swimming and dance. I was a very active child and this has greatly contributed to my good health. My parents never acted as though I was any different than my brother and sister (who don’t have CF). I have never felt like CF has made me less capable than anyone else.
I attended Georgia State University in Atlanta on an academic scholarship. I had two majors – Speech/Communications and Journalism – and graduated with a 4.0 GPA. If anybody was wondering, yes, I am patting myself on the back right now. J I have been working in Marketing for over two years.
In my (limited) free time, I like to go to the gym, go to Braves games and go out with friends. I also enjoy writing, reading, doing puzzles and participating in other nerd-like activities.
Back to life with CF…From 1996 to 2002, I attended a week-long summer camp for people with cystic fibrosis. That’s where I met some of the best people I have ever known. The CF community shares an incredible bond that cannot be understood by many. Although life with CF has had its ups and downs, I am happy to be part of such an amazing network of people.
By writing for the Reaching Out Foundation, I hope that I can inspire someone, somewhere. While I can ramble on and on about topics that interest me, I’m extremely open to questions or suggestions. If you have any ideas, email me at
drewdotson@gmail.com
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