Search for an Article

 Search

My experience with BronchandNTM360social and COPD360social

Posted on June 27, 2016   |   
Author: Delia   |   
7 Comments   |   
Like 14 Likes

I first learned of COPD360social (the online community for COPD) when it launched in late 2014. I registered immediately after learning of COPD360social and have been active since then. As an individual living with bronchiectasis, I was extremely happy for the launch of BronchandNTM360social. These platforms allow me to connect with people who know about (and live with) these diseases. I am able to share many things such as my health condition, daily activities and experiences (good and bad), and seek feedback from other people like me. I feel gratified to have the opportunity to share these things about myself and receive the much-needed support back from the community. Additionally, sharing my experiences on these online communities has helped me talk about and explain my disease to family and friends.

I’ve come to the realization that these online communities are not solely learning about health conditions and problems; they’re much more than that. They allow me to learn about other people’s lives and how they cope with similar situations. I get to discover other participants’ daily activities, exercise, hobbies, and travel experiences. Members have encouraged me to explore different ways to enjoy life, despite my disease.

It is difficult for me to put all of these emotions into words. When I am actively engaging on 360social I feel connected. I feel grateful for the support I receive through these networks, and I sincerely hope others feel the same.

Read More

Categories: Quality of Life Support

It’s a Team Effort – And We Need You

Posted on June 17, 2016   |   
Author: Delia   |   
7 Comments   |   
Like 10 Likes

The first step to solving a problem is to identify it, which has been an issue for those of us with lung and rare diseases. As a means of increasing awareness, I began entering races. I need to wear a portable oxygen concentrator because of my limited lung capacity. Last year, the magazine Runner’s World had a contest in which the winner would appear on the cover of the December issue. I recognized this as an opportunity to raise awareness of lung diseases and rare diseases to an audience of over 650,000 people.

The contest was in three stages. In the first, only the top male and the top female vote recipients move into the semifinals. The judges determine the other 98 semifinalists. Voting takes place for several months. Friends, family and even people who I’d never even met voted for me, and I made it through to the second round. I wanted people to feel that each vote for me was also a commitment to bringing attention to unneeded suffering and the need for research, treatments and cures.

Read More

Categories: Awareness

Research study to evaluate long-term use of inhaled corticosteroids among non-CF Bronchiectasis patients

Posted on June 15, 2016   |   
Author: Gretchen   |   
0 Comments   |   
Like 10 Likes

Research study to evaluate long-term use of inhaled corticosteroids among non-CF Bronchiectasis patients

 

Read More

Tags: bronch and NTM Inhaled corticosteroids Research Therapy
Categories: Research

Is pulmonary rehab for you?

Posted on May 26, 2016   |   
Author: Delia   |   
0 Comments   |   
Like 7 Likes

The Value of Pulmonary Rehabilitation

Do you have questions about the benefits of pulmonary rehab? Interested in learning who should actually seek this structured exercise program? Click here to read a blog post about the value of pulmonary rehab.

Read More

Tags: Pulmonary rehab
Categories: Pulmonary Rehab

Living with Bronchiectasis

Posted on May 06, 2016   |   
Author: Gretchen   |   
17 Comments   |   
Like 16 Likes

This blog post was written by Mary Kitlowski, founder of Running On Air, who is living with Bronchiectasis.

After years of searching for answers to my health problems, my first real answer came from the diagnosis of bronchiectasis when I was 17 years old. Back in the 70’s and early 80’s the convention was to stay away from too many x-rays. My first chest x-ray revealed a piece to the puzzle that would eventually become my diagnosis of Primary Ciliary Dyskinesia

Read More

Categories: Quality of Life

Identifying Patient-Centered Bronchiectasis Research Priorities: PCORI Engagement Award

Posted on May 06, 2016   |   
Author: Gretchen   |   
10 Comments   |   
Like 12 Likes

This blog post was written by Dr. Emily Henkle, researcher at Oregon Health & Sciences University.

In January of this year, a team led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU) began working on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create

Read More

Categories: Research

Key points from NYU NTM Patient Education Seminar, QOL Segment presented by Betsy Glaeser

Posted on April 27, 2016   |   
Author: Delia   |   
9 Comments   |   
Like 11 Likes

This blog post was written by Katie Keating, RN, MS (patient advocate).

The impact of a chronic illness affects each and every aspect of your life on a daily basis. More research is now being done on how NTM affects the quality of our lives. NYU Medical Center recently held a patient conference and I would like to summarize the key points of a patient speaker, Betsy Glaeser, Leader, NY NTM Support Group.

  • "She always looked good"- most people look at us and feel

    Read More

Categories: Quality of Life

Getting Started on BronchandNTM360social

Posted on April 27, 2016   |   
Author: Delia   |   
5 Comments   |   
Like 11 Likes

This blog post was written by Bill Clark, Senior Director of Outreach Programs at COPD Foundation and Community Manager of COPD360social.

Welcome to BronchandNTM360social! Long ago, we learned that knowledge is power, and we hope you will become a contributing and passionate member of the forum! In order to get the most from the forum, here are some tips to help you learn to navigate the site.

Registration is easy but it is also very important. To utilize some of the

Read More

Categories: BronchandNTM360social Tips

1 2 3 4 5
Sign In to Participate
Or register to become a member