Molly Butz | COPD Foundation

Molly Butz | COPD FoundationBronchiectasis and NTM 360 of the COPD Foundation and nearly 20 partnering organizations around the world want to wish you a happy World Bronchiectasis Day! Today, we are joining together to raise awareness of bronchiectasis, a chronic lung disease with increasing prevalence globally. We hope that through these efforts we will create more education on the diagnosis and inspire more research and better treatments for bronchiectasis.
Join us today and make some noise in recognizing #WorldBronchiectasisDay! Visit: https://www.bronchiectasisandntminitiative.org/Bronchiectasis/Bronchiectasis-Resources/World-Bronchiectasis-Day/Education-Events#GetInvolved

3 days ago

  • NewestOldest
  • JohnTI have told anyone who would listen that bronchiectasis and NTM are lonely diseases, since no one has ever heard of them. I am incredibly grateful to the leadership and staff of the COPD Foundation for taking up our cause, working with industry to develop better treatments, and initiating World Bronchiectasis Day! And to the organizations and people around the world who became part of this great movement! I now feel that I am part of something, not alone anymore. Thank you, thank you, thank you.2 days ago
  • Ksmiles123John, I ditto your comments. 
    Often, patients with invisible disorders feel misunderstood and isolated . It is wonderful to finally have worldwide collaboration working towards improving the quality of life for patients. 2 days ago
KK1943

KK1943

Ok

4 hours ago

SFbakr62

SFbakr62

Hello, Iโ€™m new here and just wanted to say Hi. I was diagnosed with non-CF Bronchiectasis last October when a cold turned in to be a lung infection. 2 1/2 weeks ago I was diagnosed with Covid for the first time and I have been Covid negative for five days but four days ago a chest x-ray confirmed that it has set off a lovely case of pneumonia in my left lung. Iโ€™m so happy to find this group. Itโ€™s just nice to know thereโ€™s others who understand.


Thank you and Be well

18 hours ago

  • Ksmiles123SF,
    Hello! Welcome to the site. I am sorry to read about your Covid but glad that you are now reading Covid negative. I hope that your current treatment for pneumonia brings you relief soon. Please keep us posted. 9 hours ago
Rhonda dimos

Rhonda dimos

Lots of dry hacking 

19 hours ago

Ksmiles123

Ksmiles123answered the question ARICAYCE side effects

information on Arikayce Support Programs: https://www.arikayce.com/support-programs/
Kat PHollywoodGretchen also answered the question Kat Pand 2 others also answered the question

20 hours ago

Kandy

KandyWishing everyone a fun and safe 4th of July!! 

1 day ago

Margaux

Margaux

๐Ÿ˜„

1 day ago

dk1007

dk1007

Happy World Bronchiectasis Day!  So awesome to have a day like this!  My mother is a bronchiectasis+Pseudomonas and NTM survivor.  She's looking to pivot from her current pulmonologist towards someone with more specialized expertise, given that symptoms are worsening.  Any recommendations from the community for clinics and docs in the Southern California area or nearby?  I am seeing that UCSD has a clinical site that is part of the research consortium, but wondering if folks have personal experience/recs to share!  Thanks in advance!!!!

2 days ago

Storyteller

Storyteller

How do we light a fire under Big Pharma to get more non antibiotic treatments available now ? 

2 days ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Ksmiles123Storyteller,
    You can contact your local Leglislative offices. Often, a representative or one if their aides will meet you to listen to your concerns. The more patient voices they hear, the better.  Some representatives do try to communicate the concerns of patients to the right sources and take action steps.2 days ago
  • StorytellerThanks so much for writing,  Katie. I had back surgery in late April and my lungs have not been the same since โ€ฆ2 mos. Of antibiotics and counting despite probiotics, diet, etcโ€ฆ I do feel hopeless since this is a terrible treatment for me.2 days ago
  • Ksmiles123Yes, the treatment can be awful for some patients. Private message me if you wish. You must believe that it will get better. I have been that road twice and did eventually get to the other side. Hold onto HOPE. One day at a time.
    2 days ago
Sharna04

Sharna04

Happy 1st ever World Bronchiectasis Day,  wishing everyone an easy breathing day

3 days ago

marsrocket

marsrocket

Happy World Bronchiectasis Day, beautiful breathers. 

3 days ago

Gus

Gus

I had no knowledge of this site nor any idea about #Worldbronchiectasisday. Itโ€™s amazing thereโ€™s a forum in which to learn and share more about this disease. Iโ€™m happy to provide input as to my own experiences suffering from bronchiectasis and what Iโ€™ve learned so far from battling daily and dealing with its effects and consequences. I look forward to hearing/reading and viewing all information from others. 

3 days ago

Molly Butz | COPD Foundation

Molly Butz | COPD FoundationFor World Bronchiectasis Day, Katie Keating, RN, Bronchiectasis Patient Ambassador, and Mike Hess, MPH, RRT, talk about living well with bronchiectasis. Katie offers her insights on airway clearance, nutrition, and more for managing bronchiectasis. Watch now at https://www.youtube.com/watch?v=Pn_ejFeNnvQ

3 days ago

Gus

Gus

As everyday thinking of when Iโ€™ll have extreme difficulty breathing. Today is a good dayโ€ฆ

3 days ago

Delia

DeliaHappy World Bronchiectasis Day, everyone! It is so exciting to see everyone's posts social media! ๐ŸŒŽ Don't forget to use #WorldBronchiectasisDay

Also, in case you missed it, here's a link to the Living Well with Bronchiectasis Facebook Premiere event from just a little while ago! https://lnkd.in/gB6m3VFy

3 days ago

Number 4

Number 4

Hi. I was wondering what effects moisture settings on CPAP devices have on bronchiectasis.

3 days ago

Ksmiles123

Ksmiles123

Hello! World Bronchiectasis Day is finally here. Today marks a turning point for Bronchiectasis patients worldwide. Increased public awareness will lead to greater research, new therapies. We are all being offered the gift of HOPE!
Celebrate ๐ŸŽ‰ the day in a way that gives you JOY! ๐Ÿ˜

3 days ago

Kandy

Kandy#WorldBronchiectaisDay July 1, 2022  I had this put on our local tv station for advocacy in my area. 

3 days ago

Kandy

Kandyanswered the question Best time to nebulize sodium chloride?

I do mine in the morning after my levelalbuterol then my airway clearance vest. Again mid afternoon followed by the vest again.
Ksmiles123 also answered the question Ksmiles123 also answered the question

3 days ago

Madushanka Rathnayake

Madushanka Rathnayake

This marks one of the land mark days of patients with bronchiectasis. In past there was minimum recognition offered to this entity of diseases. However, with advancement in medical expertise, its pathophysiology and quality of care; patients have new hopes. I wish all the very best.

3 days ago

ReRe

ReReasked the question: Best time to nebulize sodium chloride?

When is the best time to nebulize with sodium chloride? I have been using 3% saline twice a day....usually before meals. I plan on going out to dinner over the long holiday weekend and I am not sure if I should nebulize before or after dinner. Does …

4 days ago

Molly Butz | COPD Foundation

Molly Butz | COPD FoundationTomorrow, July 1, is World Bronchiectasis Day! This day would not have been possible without the work of a global planning committee comprised of patient advocates, representatives from collaborating patient advocacy organizations, and professional societies, and other leading experts.The committee is raising global awareness, sharing knowledge, and discussing ways to reduce the burden of bronchiectasis for patients and their families worldwide. Watch the video: https://www.youtube.com/watch?v=0e_yVGZwKT0

4 days ago

Ksmiles123

Ksmiles123

We are at the final countdown! One more day until we celebrate ๐ŸŽ‰ the 1st World Bronchiectasis Day! This is a huge victory in the field of Bronchiectasis. Lead worldwide physicians will be meeting in Prague  to  , beginning today to collaborate efforts for the benefit of Bronchiectasis Patients. :)))

4 days ago

Molly Butz | COPD Foundation

Molly Butz | COPD FoundationDon't miss the new โ€œAll About Bronchiectasisโ€ booklet, now available for download! This colorful booklet is an excellent resource for those newly diagnosed with bronchiectasis or for anyone wanting more information about this chronic lung disease.
This guide covers a wide range of topics, including how bronchiectasis is diagnosed, treatment options, tips for avoiding exacerbations, and much more. Download your free copy at https://www.bronchiectasisandntminitiative.org/Bronchiectasis/Bronchiectasis-Resources/Bronchiectasis-Educational-Materials

5 days ago

Kandy

KandyWorld Bronchiectasis Day supporting all those who have bronchiectasis around the world. 

5 days ago

Ksmiles123

Ksmiles123

Share your story: 
Has bronchiectasis impacted you? Whether you have bronchiectasis, are a caregiver for someone that does, a friend, a family member, or a health care provider, we encourage you to tell your story. Post on social media and use the hashtag #WorldBronchiectasisDay, or contact us at info@bronchiectasisandntm360.org.

5 days ago

Storyteller

Storytelleranswered the question What to do about coughing up blood?

I am not on arikayce, but sometimes cough up small amounts of blood. My pulmo is not concerned about this. It is usually after my induced coughing from The Vest
Ksmiles123 also answered the question Ksmiles123 also answered the question

5 days ago

smcbenner

smcbennerasked the question: What to do about coughing up blood?

I have been taking Arikcase for 4 months. Today I am coughing up small amounts of blood. should I suspend my use of Arikcase?

5 days ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.


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