The COPD Foundation Blog Has a NEW Home!

May 1st, 2015 | Author: Fabiana Beltran

As you probably know, the COPD Foundation launched the COPD360social.org networking platform in November 2014. The site is an invaluable resource by serving as a one-stop-shop for COPD: access quality educational materials, participate in research, become an advocate, and connect with new friends. It allows us to meet, chat, collaborate and support one another- and now you can read the Faces of COPD blog posts on COPD360social.org! We want to hear from patients, caregivers, and professionals daily.  Your thoughts, concerns, fears, and inspiration- become a part of our interactive, collaborative community to friends, learn about events in your area,COPD360ourcommunityonline_AAcard chat with the experts, and learn how to take action- all on your time, at your pace. At COPD360social you can:

  • Create a personal profile describing yourself
  • Get to know others with COPD
  • Ask a question
  • Start a discussion
  • Share your story
  • Comment on a blog
  • Access educational materials
  • Find out about COPD events in your area and across the country
  • Find a pulmonary rehabilitation program near you
  • Find a breathing support group near you
  • Make a difference through research
  • Have a voice in policies and laws
  • Be inspired!

There is a lot of information on the internet. Sometimes it can be pretty overwhelming. It can be hard to know what’s true and what’s not, and which are proven treatments and those that don’t have scientific support. With COPD360social you can be confident you are getting quality information from a trusted source. Join COPD360social, because we are stronger when we work together. Visit www.COPD360social.org to create your profile and access future COPD Foundation blog entries.

Running for his Father and the COPD Community

January 5th, 2015 | Author: Fabiana Beltran

Justin Daniels is a distance runner from Richmond, Indiana who is dedicated to honoring those who live with COPD by racing in all 50 states in 2015. He started his hobby when his father Leonard, 60, was diagnosed with COPD. “His lungs don’t work very well, so I am making it my mission to spread awareness about this disease,” Justin says. “I set up a booth at each event I am running with information that I am able to pass out to anyone wanting to know more about what I am doing. My mom helps pass out the information while I am running my races, but before and after I am at the booth or walking throughout the area asking people if they know someone living with COPD.”

The COPD Foundation caught up Justin to learn more about his efforts:

Q: How long have you been a runner?

A: I started out running while I was in high school as a Junior and Senior where I was a member of the cross country team as well as the track team. I started getting serious about distance running in 2011 wfaces1hen I found out  my dad had COPD. I felt like I needed to do something not only for him but for everyone else living with the disease. I knew there wasn’t much I could really do besides make people more aware of what COPD actually is, as well try and raise money to help find a cure.

Q: How did you get involved in raising awareness for COPD?

A: I feel there are so many people living in the United States alone that know nothing or very little about what COPD is and how they can get treated to live a better life. I have worked at Reid Hospital in Richmond, Indiana for almost 2 years now and I see a lot of COPD patients in the ICU. I feel that with increased education they might be able to avoid a trip to the hospital and could have a better chance at living a more normal life.

Q: When you started your endeavor two years ago, what was your main goal?

A: When I first started doing the marathons 2 years ago, my main goal was to run a marathon in honor of my dad and everyone else living with COPD. After running that first marathon I felt like I couldn’t do another one because of the pain I was in, but after awhile I thought about how my dad and everyone with COPD endure a lot more pain, so I continued.

Q: What are your goals now?

A: My current goal is to run a marathon in all 50 states; I would like to do this as soon as I can. On November 1st, 2014 I completed my 4th marathon – my biggest and toughest race so far. I raced the Chicago marathon on October 12th, 2014 and I wanted to see how I would feel after only taking 2 weeks off. I actually felt really good, so now I know I can run races closer together. I feel running in every state will give me a chance to spread the word and pass out information to as many people as possible –  just in case they have symptoms so they are able to get checked out by their doctor. It also gives me the chance to meet COPD patients that live with the disease on a daily basis. I want the races to give patients hope and reassurance that there is someone out there taking action to give them a voice.

faces2Q: What inspires you to continue racing for COPD awareness?

A: My main inspiration to keep running to bring awareness to COPD is my dad and the millions of people living with COPD each day. My dad and I have a very close relationship with each other. Every other person with COPD has family that care about them as well. I feel this is the least I could do to honor them the best way I can. On days when the weather isn’t perfect or I’m too tired, I look around and think,  “My life’s not so bad,” which then inspires me to get out the door and go.

Q: What advice do you have for others who would like to take similar action?

A: My advice for anyone who would like to take action is to research as much information you can so you have knowledge of what the disease actually is. I also think whatever you choose to do to make people aware, make sure you give it 110% all the time, even when you think it may not be possible. You can achieve anything if you really want to – it just may take more time.

You can find Justin’s “Run for a Cure” Facebook page here.

COPD Links to Malnutrition and Economic Burden

December 19th, 2014 | Author: Aleena Gardezi

A recent study around the global economic burden of malnutrition tied to chronic illness found that patients with COPD experience the highest rates of malnourishment. Although close to 60 percent of patients suffering from chronic illness are never screened for malnutrition, disease-associated malnutrition imposes an economic burden on society of about $157 billion per year, according to research published in a supplemental issue of the Journal of Parenteral and Enteral Nutrition (JPEN).

nutritionThe study explains that when malnutrition goes undiagnosed, particularly in seniors, it can lead to an increase in health complications, hospital readmissions rates, and overall health care costs, which also increases health care costs. In the eight specific diseases that were evaluated by direct medical costs, the years of quality life lost, and mortality to determine the total economic burden, more than 80 percent of the total cost came from cases of depression, chronic obstructive pulmonary disease (COPD), coronary heart disease, and dementia. Patients with COPD had the highest malnutrition rate at 11 percent.

Because patients with COPD require up to 10 times the calories needed by a patient without COPD, it is important for patients to make sure they are getting the nutrients and energy their body requires. Proper eating habits can help fight body infections and help produce the energy required to function normally. Malnutrition can be treated if the patient is screened and offered nutritional support when they are at risk.  Dieticians can guide patients by working out a diet plan that recommends high calorie foods that are easy to prepare. The COPD Foundation also offers information regarding proper diet and nutrition in its Big Fat Reference Guide.

Please contact our C.O.P.D. Information Line at 1-866-316-2673 for further information and support.

If you would like to share your thoughts and experience with COPD, check out COPD360Social, a “one-stop-shop” for members of the COPD community.

Read the full Journal of Parenteral and Enteral Nutrition (JPEN) report here.

Have Trouble Eating with COPD? You’re Not Alone

December 5th, 2014 | Author: COPD Coach

Dear COPD Coach,

I have stage 4 emphysema. It is impossible to eat without immediately feeling chest tightness or bloated like I am about to explode. I read about how the diaphragm gets pushed by the stomach and how it changes shape as COPD worsens. Does this mean that eventually I won’t be able to eat?

Thank you,
Worried

Dear Worried,

Thanks for writing. As a patient myself at stage 4, I also experience this. The mechanism you described is exactly correct! To answer your question, you will always be able to eat, however you are going to have to eat a little differently. As you lungs deteriorate, they become larger which then pushes against your stomach. When you eat large meals, your stomach pushes against your lungs and diaphragm which restricts your breathing. The key here is not to eat large meals or large portions, but instead eat smaller meals throughout the day. Also do not eat foods that

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can cause bloating or gas. Drinking plenty of water during the meals will also help ease the bloating. If you use supplemental oxygen, make sure you use it while you eat.

When my wife and I go out to dinner, I tend to eat too much and have a difficult time returning to the car. I have since learned to order smaller portions, especially if I have to walk a long distance after the meal. I also make sure to eat throughout the day, several times a day, even if it is just a light snack. When I do this, I feel far less bloated.

For information on what is best to eat, go to the COPD Foundation’s Big Fat Reference Guide webpage. It is a free download and contains lots of information written for the patient. There you will find a list of the best foods along with lots of other useful lifestyle tips.

It is important to remember that when you eat large meals, you burn lots of calories in order to digest. You also burn calories just trying to breathe! So, the foods you eat must contain not only enough calories to augment what you are using up. In other words, learn to eat smart!

While you are on our website, you might want to check out our new social network called COPD360social. It is a site where you can meet others with COPD and see what works for them! Just click on community and registration is quick and simple!

Hope this helps,
-The COPD Coach

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

The COPD Foundation Thanks You

November 27th, 2014 | Author: Fabiana Beltran

This Thanksgiving, the COPD Foundation would like to express its gratitude to you, our advocates, for all of your time and effort on spreading awareness of COPD. Your passion and dedication is inspiring and we appreciate all of your hard work over the years.

As 2014 comes to a close, we look forward to the latter part of our 10th Anniversary. We began our journey in May pinwheel thanks2004, with a small team of individuals who were committed to bringing effective change to a widely misunderstood, ignored, and stigmatized disease-state. We formed the Foundation with the goal of preventing and curing chronic obstructive pulmonary disease, and to improve the lives of all people affected by this devastating disease.

2014 was a transformational year for the COPD Foundation and a time of many firsts for the international COPD community.

We look forward to seeing these research, educational, and advocacy opportunities grow and thrive to ultimately form a COPD movement that will bring our silent epidemic to the forefront.

Happy Thanksgiving!

Alpha-1 Awareness: #AreYou1?

November 24th, 2014 | Author: Fabiana Beltran

At least 100,000 Americans live with Alpha-1 Antitrypsin Deficiency (Alpha-1), but fewer than 10% have been diagnosed. Alpha-1 is the most common known genetic risk factor for emphysema. Are you 1? That is the question the Alpha-1 Foundation is asking YOU for COPD/Alpha-1 Awareness Month.

Take part in the  Alpha-1 activities happening this month!

  • As part of the “I am 1. Are you?” awareness campaign, the Alpha-1 Foundation wants you to record a video of yourself or a loved one and post it on Facebook and/or other social media sites. Make sure to use the hashtag #AreYou1 and include a link to alpha-1foundation.org/awareness.

  • Participate in the Alpha-1 Art Auction! In November 2013, NASCAR drivers showed their artistic side for Alpha-1 Awareness when they created art alongside children living with Alpha-1. Now you have a chance to bid on their creations! Proceeds will benefit the Alpha-1 Foundation’s research programs.

Take a look at the artwork and participate in the auction here.

Spread the word about Alpha-1 by downloading the fact sheets below and sharing with friends and family. Don’t  forget to ask – #AreYou1?

Fact Sheets: