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FDA Workshop: Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease

Posted on April 17, 2019   |   
Author: Gretchen   |   
3 Comments   |   
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This blog post was written by Gretchen McCreary, Research Coordinator, COPD Foundation

The Food and Drug Administration (FDA) held a successful workshop on April 8, 2019 entitled, Development of Antibacterial Drugs for the Treatment of Nontuberculous Mycobacterial (NTM) Disease. The workshop panelists included experts in their fields of NTM and Patient-Reported Outcomes (PROs). The goal of the workshop was to discuss clinical trial design related to the advancement of antibacterial therapies to treat NTM. Among the topics discussed, the panelists presented on and delved into the patient perspective for treatment of NTM, lessons learned from completed NTM trials and the implications for future trials, use of patient-reported outcome measures in NTM trials, as well as academic and industry perspectives on various case studies.

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Categories: Awareness Research

Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
2 Comments   |   
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This blog post was written by Amy Leitman, Director of Policy & Advocacy

As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to your life, as you help your loved one with treatments and the challenges of a changed lifestyle. Chronic illness often makes people feel like they have lost control, or that they are overwhelmed by the enormity of this undertaking. These feelings are normal, and neither caregiver nor patient should push them aside or disregard them. It helps for both of you to know as much as possible about the illness and treatments, so you can make decisions together.

It's important to address the emotional and physical issues you face, because each patient needs a strong support system, as does the caregiver, to be a strong support to the patient.

From specialists to primary care physicians to pharmacists and therapists, health care providers are often a valuable source of information needed to help with the ongoing long-term regimen needed to treat NTM lung disease, pseudomonas, bronchiectasis, and other related diseases. Caregivers, listen to your instincts and to your loved one as well. Listen and observe for anything out of the ordinary in case it needs to be reported to the doctor.

The BRONCHIECTASIS & NTM INITIATIVE NTM INFO & RESEARCH and the COPD FOUNDATION websites have several resources available to help patients, caregivers, and loved ones, and we encourage you to use them. Each of these websites have online forums where community members connect and interact.

 

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Tags: Bronchiectasis Caregivers NTM patient support
Categories: Awareness Support

Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

Posted on November 20, 2018   |   
Author: Gretchen   |   
6 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Exacerbations and flare-ups are a part of life for many bronchiectasis and/or NTM patients. A flare-up is when your everyday symptoms worsen; such as on humid or rainy days. Exacerbations, however, last longer and are more serious. They usually happen when a respiratory infection causes inflammation, excessive mucus, fever, increasing cough, shortness of breath, or reduced lung capacity, as noted on pulmonary function tests.

Unlike flare-ups, exacerbations can have permanent effects. Some patients’ conditions may never get back to where they were before the exacerbation. This often is the case following a pseudomonas infection.

As a patient and a nurse, I made light of my exacerbations in the past, just figuring that another round of antibiotics was part of the journey. Little did I realize the impact long-term antibiotics would have on my gastrointestinal and genitourinary tracts. I now take a more proactive approach to prevent any possible infection from invading my body and avoid antibiotics as much as I can.

Winter weather causes an increase in symptoms because cold air is denser, drier, and more difficult to breathe. Airways and nasal passages may be dry, causing inflammation that worsens symptoms, increases mucus production, and increases your risk of illness or infection. In cold weather especially, individuals at risk of infection should try to do everything possible to keep your body strong and prevent acute exacerbations.

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Tags: Bronchiectasis exacerbations NTM prevention of exacerbations Quality of Life Winter exacerbation
Categories: Awareness

Lend Your Voice to Raising Supplemental Oxygen Awareness

Posted on August 02, 2018   |   
Author: Gretchen   |   
0 Comments   |   
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Mary Kitlowski, a member of BronchandNTM360social and COPD360social is in search of individuals who use supplemental oxygen (or a friend or family member who does) to share their stories. In childhood Mary was diagnosed with a rare genetic disorder called Primary Ciliary Dyskinesia (PCD) and later Bronchiectasis. She’s always had a passion for running and created an organization called Running on Air http://www.runningonair.net/virtual-racesthat seeks to advance awareness of lung diseases and other rare illnesses, to raise funds for organizations that seek to raise the same awareness and to inspire anyone who suffers with a disability to continue to exercise and live a healthy existence no matter the condition.

For much of the month of August, Mary hopes to share a story a day about individuals who use supplemental oxygen. She also plans to create a supplemental oxygen fact sheet. If you or someone you know would like to share your story and lend your voice to raising awareness on supplemental oxygen, please send your story and photo(s) to: Mary.RunningOnAir@verizon.net by August 10, 2018.The stories and photos will be highlighted on Running on Air’s Facebook page.

The story should include:

  • 1-3 paragraphs
  • Why is the individual on oxygen?
  • What has changed due to the supplemental oxygen?
  • Have any obstacles been overcome due to the oxygen therapy?
  • Since beginning supplemental oxygen, what can the individual no longer do?
  • Anything else that may be relevant to the story
  • A photo with the supplemental oxygen, if possible

Thank you for considering a contribution to this important endeavor. An unknown author said, “One voice can make a difference. A million can change the world.” We have to begin somewhere.

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Tags: Awareness Bronchiectasis Running on Air
Categories: Awareness

COPD, Bronchiectasis and NTM Webinar Recording

Posted on July 09, 2018   |   
Author: Gretchen   |   
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We hope you were able to join us for our June 2018 webinar with expert speaker Dr. Charles (Chuck) Daley. We are pleased to offer you the FULL RECORDING of this event. This recording is free and can be accessed at any time.

During the 60-minute webinar, Dr. Daley offered an overview of COPD, bronchiectasis and NTM, including how these conditions relate to one another as well as treatments for each condition. There were two live question and answer sessions during which members of the audience were given the opportunity to ask questions of the expert speaker.

Dr. Charles (Chuck) Daley

National Jewish Health, Denver, CO, USA

 

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Tags: Awareness Bronchiectasis Treatment Bronchiectasis; NTM; Research COPD NTM Treatment
Categories: Awareness

Event Alert: An Introduction to Bronchiectasis & NTM Webinar

Posted on June 01, 2018   |   
Author: Gretchen   |   
2 Comments   |   
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The COPD Foundation is convening a webinar to educate the COPD community on bronchiectasis and NTM lung disease. Join us for An Introduction to Bronchiectasis and NTM on Wednesday, June 20th from 1:00-2:00pm ET. Expert speaker, Dr. Charles Daley from National Jewish Health will provide an overview, covering the agenda items listed below, and answer questions that community members may have. This event is free, at no cost to the participants, but registration is required. Please click here to register for the event and mark your calendars! You will receive an email with connection instructions upon registering.

An Introduction to Bronchiectasis and NTM

1:00 – 1:05 pm Welcome and Introduction – COPD Foundation

1:05 – 1:20 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are COPD and bronchiectasis? 

o How do they relate?

o How do they differ?

· What causes these conditions?

· What are common symptoms of these conditions?

· How are they diagnosed?

1:20 – 1:30 pm Questions and Answers

1:30 – 1:45 pm Overview of COPD, Bronchiectasis and NTM – Chuck Daley, MD

· What are NTM?

· How do they relate to COPD and bronchiectasis?

· How are NTM treated in these conditions?

o How is treatment similar?

o How is treatment different?

· What resources are available for patients?

BRONCHIECTASIS AND NTM INITIATIVE WEBSITE/COMMUNITY

BRONCHIECTASIS AND NTM INFORMATION LINE: 1-833-411-LUNG (5864)

NTM INFO & RESEARCH WEBSITE

1:45 – 1:55 pm Questions and Answers

1:55 – 2:00 pm Closing Remarks COPD Foundation

 

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Tags: Bronchiectasis COPD Education Dr. Charles Daley NTM
Categories: Awareness

Applying for Disability Benefits

Posted on April 02, 2018   |   
Author: Gretchen   |   
13 Comments   |   
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This blog post was written by Cynthia Flora, patient advocate and head of NTM Support Group

Applying for disability with the Social Security Administration (SSA) can be a daunting task, but also is working with chronic lung conditions. My best piece of advice is EDUCATE YOURSELF AND PUSH FORWARD. If your symptoms and/or side effects from medications are making it difficult to work, think about getting more information and possibly applying. Typically, this process gets more difficult each year as the agencies have less money and our population ages. The level of difficulty will depend in part upon your local office.

I was lucky enough to find knowledgeable, kind employees that I could sit down with and actually helped talk me through the process. Go in armed with a clear one-page synopsis of dates, diagnoses, symptoms, and ways your condition affects your work, etc. You can always expand from there. If you cannot go in person and have to do it via phone, I would not recommend spending much time with a worker who is not being helpful, even though you may have to wait for another phone rep. Keep in mind that a bit of kindness and gratitude on the phone often goes a long way when you are asking someone to help.

Everyone is on his or her own journey. As for me, not long after I began a three year stint on the "big three antibiotics", it was obvious to me that my new job should be staying well. Exhaustion and the fear of getting the flu or an upper respiratory infection every time I used a phone, computer, or fax machine that a sick co-worker had just touched made work a huge impediment.

In general, the older you are, the sicker you may be, and the more difficulties you face doing your current job are key factors. You do NOT want to put a brave face on your condition. You want them to understand how difficult your worst days can be. If awarded disability your monthly payment will be the amount you would receive had you remained working and applied for Social Security at your full retirement age. This varies with age due to the government chipping away at benefits. You can look it up on your individual SSA account or call the SSA if you can't figure it out.

HTTPS://WWW.SSA.GOV/DISABILITY/

HTTPS://WWW.DISABILITYBENEFITSCENTER.ORG/SOCIAL-SECURITY-DISABLING-CONDITIONS

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Tags: Applying for social security bronch and NTM disability respiratory issues
Categories: Awareness

A Dive Into Bronchiectasis and NTM Town Hall Teleconference Recording

Posted on March 26, 2018   |   
Author: Gretchen   |   
1 Comments   |   
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A Dive into Bronchiectasis and NTM Town Hall Teleconference Recording

We hope you were able to join us for our March 2018 A Dive into Bronchiectasis and NTM Town Hall Teleconference. We are pleased to offer you the full recording from this event. The recording is free and can be accessed at any time.

During the 60-minute teleconference, expert speaker Dr. Tim Aksamit offered an overview of bronchiectasis exacerbations, including the treatment and prevention of exacerbations. He also covered environmental factors associated with NTM and the treatment of NTM lung infections, along with other comorbidities of bronchiectasis. There were two live question and answer sessions during the call comprising more than one-third of the hour.

Tim Aksamit, MD

Mayo Clinic, Rochester, MN, USA

Tim Aksamit is a consultant and associate professor in the pulmonary disease and critical care medicine division of Mayo Clinic, Rochester, MN, USA. 

Dr. Aksamit received his undergraduate degree in chemistry from the University of Illinois in Urbana, IL; medical degree from Northwestern University in Chicago, IL, and medical training in internal medicine as well as pulmonary and critical care medicine at the University of Iowa in Iowa City where he also was a chief resident. Additional research was completed at Hammersmith Hospital in London, U.K. Prior to joining the staff at Mayo Clinic in 1998 he was in private practice in Madison, WI. He has also previously served as the director of the medical intensive care unit at St. Mary’s Hospital Mayo Clinic, Rochester, Minnesota.

Dr. Aksamit’s research and clinical interests have focused on mycobacterial disease and bronchiectasis. He has co-authored a previous international statement by the American Thoracic Society and Infectious Disease Society of America on the diagnosis and treatment of nontuberculous mycobacterial disease as well as collaborated as an investigator on a number of multicenter clinical trials involving mycobacterial disease and bronchiectasis. Dr. Aksamit has assisted in the development and implementation of a collaborative tuberculosis clinic project between Mayo Clinic and the Olmsted County Public Health Department and has served as the medical director since its inception in 2001. He currently serves as chair of the U.S. Bronchiectasis and NTM Research Registry. Other positions held include chair of the State of Minnesota Tuberculous Advisory Committee as well as director of the Mayo Mycobacterial and Bronchiectasis Clinic. 

The COPD Foundation would like to thank Dr. Aksamit for his participation in this Bronchiectasis and NTM Town Hall. Stay tuned for information on upcoming events!

To access the free recording, click here.

This activity was made possible by a generous grant from Insmed Incorporated.

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Tags: Aksamit Bronchiectasis; NTM; Research Research Town Hall
Categories: Awareness

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   |   
12 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

Bronchiectasis and NTM 101 Town Hall Recording

Posted on December 28, 2017   |   
Author: Gretchen   |   
1 Comments   |   
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Bronchiectasis and NTM 101 Town Hall Recording

We hope you were able to join us for our December 2017 Bronchiectasis and NTM 101: The Basics Town Hall Teleconference. We are pleased to offer you the full recording from this event below. The recording is free and can be accessed at any time.

During the 60-minute teleconference, expert speaker Dr. Kevin Winthrop offered an overview of bronchiectasis and NTM- what are these conditions and how do they relate to one another? What causes them? What are common symptoms of both conditions? He then discussed diagnosis and treatment in detail. There were two live question and answer sessions during the call comprising more than one-third of the hour.

More About Your Expert Speaker

Kevin Winthrop

Dr. Kevin Winthrop
Oregon Health & Science University, Portland, OR, USA

Kevin L. Winthrop is a Professor of Public Health and Associate Professor of Infectious Diseases and Ophthalmology at the School of Public Health and School of Medicine at Oregon Health & Science University (OHSU) in Portland, OR, USA.

Dr. Winthrop received his undergraduate degree in biology from Yale University, New Haven, CT, USA and his medical degree from OHSU. He completed his internal medicine residency training at Legacy Emanuel Hospital, Portland, OR. He completed an infectious disease epidemiology fellowship at the US Centers for Disease Control and Prevention (CDC). In 2003, Dr. Winthrop was conferred a masters in public health from the University of California, Berkley, CA, USA. In 2006, Dr. Winthrop returned to OHSU as Assistant Professor before progressing to his current appointment in 2012.

A former infectious disease epidemiologist in the Division of Tuberculosis Elimination at the CDC, Dr. Winthrop has co-authored more than 170 publications, many regarding the epidemiologic and clinical aspects of opportunistic infections associated with immune-mediated inflammatory diseases, particularly those related to biologic immunosuppressive therapies.

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Tags: Bronchiectasis Kevin Winthrop NTM Town Hall
Categories: Awareness

Foliage and the Respiratory Patient

Posted on October 31, 2017   |   
Author: Gretchen   |   
0 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

Fun fall decorations, such as pumpkins, hay stacks and cornstalks are a great way to get in the autumn spirit. Who doesn't love stunning fall foliage? While most people enjoy the lingering warm weather, Indian summer and unseasonably warm temperatures can make allergy symptoms last longer.

Ragweed plants usually begin to pollenate in mid-August and may continue to be a problem until a hard freeze, depending on where you live. As ragweed season winds down in the North and Northeast, the leaves start to fall, ramping up mold production. When leaves just sit in your yard, moisture accumulates, accelerating mold growth. If you have mold allergies, these signs of the season can do a number on your health.

Mold spores that grow on dead leaves and release spores into the air are common allergens throughout the fall. Old spores may peak on dry, windy afternoons or on damp, rainy days in the early morning.

Mold is a non-scientific name for many types of fungi- unwanted patches of black, brown, blue, yellow, pink, green, smelly fuzzy growths. Molds, both indoors and outdoors require moisture.

A runny nose, itchy eyes and scratchy throat can arise as the days get shorter and the leaves begin to change.  Most commonly diagnosed mold related symptoms include: asthma, allergic rhinitis and nasal congestion, post nasal drip with sore throat, coughing and hoarseness.  Mold allergies can cause sleepless nights and daytime fatigue.

Allergies can have a huge impact on quality of life and it's completely unnecessary suffering. A few recommendations for avoiding allergens outside include the following:

 

  • Start taking allergy medications 1 to 2 weeks before ragweed season begins-but please, always check with your doctor before starting a new medication.
  • Camping and outdoor trips should not be scheduled during times of high pollen count, which is usually September to October for ragweed.

 

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Tags: bronch and NTM Fall tips Mold Respiratory
Categories: Awareness

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