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Archive: June 2016

My experience with BronchandNTM360social and COPD360social

Posted on June 27, 2016   |   
Author: Delia   |   
7 Comments   |   
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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.

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Categories: Quality of Life Support

It’s a Team Effort – And We Need You

Posted on June 17, 2016   |   
Author: Delia   |   
7 Comments   |   
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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.

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

 

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

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