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Archive: February 2018

To Be or Not To Be Compliant-That is the Question

Posted on February 16, 2018   |   
Author: Gretchen   |   
4 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Are you compliant with your everyday NTM/bronchiectasis routine?

As we are still early into 2018, I read that only 8% follow through with their New Year’s resolutions. Was one of your New Years’ resolutions to work towards being as healthy as possible under the present circumstances?

Most people (not including NTM/bronchiectasis patients) get up, maybe have their coffee, take a shower and get ready to use their “taken for granted” energy to get going and have a very productive day. NTM /bronchiectasis patients start their day off more slowly, often after less than a superb night’s sleep. Most choose not to take a quick shower but a slow bath in attempt to avoid meeting mycobacterium from their showerhead. Many avoid coffee due to acid reflux issues. 

Some patients are affected by daily variables in the weather. Many wait and see how they will feel on any given day before they approach their tasks of the day. Many patients do not get up and go to work (or to an activity that they truly enjoy) on a daily basis due to not feeling up to par. Staying home can get very old very quickly regardless of where you live, the home you reside in, especially if you are a social person.

The daily tasks of an NTM/Bronchiectasis patient may include the following: 

· Airway clearance either with a vest, accopella, flute, aerobica 

· Pulmonary rehabilitation

· Daily nasal washes

· Medications

· Labs


 

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Tags: Bronchiectasis compliancy daily routine nasal wash NTM
Categories: Awareness

Event Alert: Second Town Hall Teleconference: A Dive into Bronchiectasis and NTM

Posted on February 06, 2018   |   
Author: Gretchen   |   
13 Comments   |   
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We are excited to announce the second part of our two-part town hall teleconference series: A Dive into Bronchiectasis and NTM. This town hall event will take place via teleconference (no visual portion) on Monday, March 5thfrom 2pm to 3pm EST. Expert speaker, Dr. Tim Aksamit of the Mayo Clinic will take a dive into bronchiectasis and NTM by covering the topics listed in the agenda below. This event is free, but registration is required to participate. Please CLICK HERE to register for the event and mark your calendars accordingly! You will receive the dial-in details upon submission of the registration form.

A Dive into Bronchiectasis and NTM

2:00 – 2:05 pm    Welcome and Introduction – COPD Foundation

2:05 – 2:20 pm    Exacerbations – Tim Aksamit, MD

 

· The vicious cycle of bronchiectasis

o Heterogeneous causes, chronic disease

· What is an exacerbation?

· Treatment of acute exacerbations of bronchiectasis

· Preventing exacerbations

o Pulmonary hygiene/airway clearance/exercise

o Pulmonary rehabilitation

o Vaccines

2:20 – 2:30 pm Questions and Answers

2:30 – 2:45 pm NTM and Comorbidities – Tim Aksamit, MD

· Environmental reservoirs of NTM: soil and water

· Treatment of NTM lung infections- overview

o Mycobacterium Avium Complex (MAC)

o Mycobacterium Abscessus

o Mixed NTM infection

o Other NTM

· Comorbid issues: Gastroesophageal Reflux Disease (GERD), sinus disease, other

· Research and involvement

2:45 – 2:55 pm Questions and Answers

2:55 – 3:00 pm Closing Remarks – COPD Foundation

 

 

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Tags: Aksamit Bronchiectasis Research
Categories: Awareness

Linhaliq/FDA Update

Posted on February 01, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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Aradigm, the company that submitted Linhaliq to the FDA for approval, announced that they had received a complete response letter from the FDA stating that they would not approve the treatment at this time.

Over the last several months many of you have communicated with the FDA about the unmet need in the Bronchiectasis community. You told them your priorities, your needs and your frequent battles to keep exacerbations at bay.

While we are disappointed that important patient focused issues were not adequately addressed within the FDA’s response to Aradigm, we believe that your voices will make a difference in moving forward in the quest to identify and approve new treatments for bronchiectasis. We appreciate Aradigm’s commitment to addressing the needs of the bronchiectasis community and will continue to work with all stakeholders to improve the lives of people with bronchiectasis moving forward.

If you would like to read more about Aradigm’s announcement you can view the press release HERE.



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Tags: Bronchiectasis FDA Research Treatments
Categories: Research

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