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June 27, 2016Quality of LifeSupport

My experience with BronchandNTM360social and COPD360social

This blog post was written by Made Pramana, a Bronchiectasis patient living in Denpasar, Bali, Indonesia.

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.

7 Comment(s)

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Delia June 27, 2016

Made, thanks for your willingness to share your experiences related to these online communities. I'm glad to see that you have found a support system through these sites, and I agree with you--I hope other members find them resourceful as well!

madepramana June 28, 2016

I'm happy to be on COPD360Social and BronchandNTM360Social. It's great to be here :)

Elisha Malanga June 28, 2016

Thank you for sharing your story. I am so glad that the social sites have been helpful--your posts and support of others on the community is wonderful.

Anna October 1, 2016

I am living with bronchiectasis and have been struggling lately. I used to get about 18 months between exacerbations and now I am lucky if I get 6 weeks. Any tips for keeping a good attitude?

madepramana October 2, 2016

Hi Anna, I also feel the same thing. I think that I get exacerbation every 2-3 months, and it's easy for me to get sad. I like to hear motivational talk, read some stories; anything to make my mind positive. My attitude is not that great :p Would love to hear other tips from you.

Dixie Miller November 15, 2016

Dixie<br />I have just one more session to complete my pulmonary rehab. I have learned so much from my respiratory therapist. She has given me tips on how to make the activities of daily living easier, the exercises to help my breathing, and most of all, it is awesome to talk with someone who understands what bronchiectasis is and how it effects a person's life. I would certainly recommend it and I am so glad my Dr. sent me to the program.

madepramana November 16, 2016

Hi Dixie, I am so glad to hear know about the pulmonary rehab and also the help from respiratory therapist. It feels great when the health care provider understand what we need and want to listen to us. I hope someday I get this program :)