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Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
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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

FDA Hearing: Ciprofloxacin Inhalation Powder

Posted on November 17, 2017   |   
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This blog post was written by Tracie Sullivan, Grassroots Manager, COPD Foundation.

My first week as a new staff member at COPD Foundation has been an exciting and busy one! Yesterday I had the pleasure of attending the Food and Drug Administration (FDA) Antimicrobial Drugs Advisory Committee Meeting with six exuberant, welcoming, and passionate advocates. This committee hearing was discussing proposing a new drug application called ciprofloxacin inhalation powder, for reduction of exacerbations in non-cystic fibrosis bronchiectasis in adult patients with respiratory bacterial pathogens. The advisory panel is set up to make recommendations to the FDA about whether or not they should approve a drug. Committee members for this advisory council were made up of 16 individuals composed of doctors, medical professionals, higher education professors, clinical research, mathematical statisticians, consumer and patient representatives.

As the proceedings started, myself and my colleagues learned about the research behind ciprofloxacin inhalation powder, the results from the clinician trials, the biostatistics involved, and clinical safety. Once the afternoon session began, our advocates were able to stand in front of the committee members and share their stories with bronchiectasis. Our advocates included doctors, patients, and caregivers. Those who had been a part of the clinical trials and had seen significant improvements, and those who did not have the opportunity to be a part of the trial, and were looking for new medical treatment opportunities. These stories included the everyday challenges they face, the medical routes they must adhere to, the lifestyle changes they have had to make, and concerns about the lack of research and medical advancements. Each advocate discussed how this new and innovative drug could provide hope for individuals with bronchiectasis, how it could change their lives. How one less exacerbation could keep them out of the emergency room, could allow them to go to that family event they had missed years before, how their quality of life could be instrumentally improved.

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Tags: Advocacy Bayer Cipro FDA
Categories: Research Support

The Bronchiectasis and NTM Information Line is now open!

Posted on September 25, 2017   |   
Author: Gretchen   |   
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The COPD Foundation is happy to announce the release of the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864). The Bronchiectasis and NTM Information Line is a toll-free number managed by the C.O.P.D. Information Line for peer-to-peer information and referrals on Bronchiectasis and NTM by patients and caregivers. Callers receive one-on-one support from an Associate that speaks English and Spanish.

All Information Line Associates are trained over a rigorous 80-hour process on customer service and call etiquette, service to sales, Health Insurance Portability and Accountability Act (HIPAA) compliance, patient resources, and the programs of the Bronchiectasis and NTM Initiative.

The Bronchiectasis and NTM Information Line is now available for patients, caregivers, and friends looking for more information. A live Associate can be reached Monday through Friday from 9:00am to 6:00pm ET.


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Tags: Bronchiectasis COPD Info Line NTM
Categories: Support

What is an Adverse Drug Reaction?

Posted on September 30, 2016   |   
Author: Gretchen   |   
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What is an Adverse Drug Reaction?

Many of us take medications on a regular basis. What constitutes an adverse reaction to the medication versus a normal side effect? Do you know how to tell the difference? Check out some tips here:

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Categories: Awareness Support

My experience with BronchandNTM360social and COPD360social

Posted on June 27, 2016   |   
Author: Delia   |   
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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

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