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9 hours ago

Delia

Delia

Do you live within driving distance of Silver Spring, Maryland? Are you willing to speak publicly about how bronchiectasis has affected your life or the life of someone you care for? We are looking for individuals living with bronchiectasis or their caregivers to join us in educating the Food and Drug Administration to make sure that those who consider whether or not to approve new treatments for bronchiectasis truly understand what the burden of the disease is and what matters most to the community. If you are interested in learning more please email jsullivan@copdfoundation.org by Monday, October 23rd. There may be more opportunities in the future, but the current opportunity to testify will occur on November 16th and there is a deadline of October 24th to register, so contact us to explore if this opportunity is a fit for you. We will make sure to keep the community informed about potential new treatments, the FDA process and any other opportunities to make your voices heard in person and online!

14 hours ago

  • Ksmiles123Hello! This is a great opportunity to get your voice heard regarding the ongoing needs of the patient. I am so glad that the FDA now truly wants to listen to the voice of the patient.
    You will learn more about the process of new drug approval and how the FDA process. It is a very exciting time for patients since many new drugs and treatments are in the pipleline at this time.10 hours ago

  • Made PramanaLove to hear this! :)3 hours ago

Ksmiles123

Ksmiles123https://www.mindbodygreen.com/articles/the-top-foods-that-cause-inflammation?utm_source=mbg&utm_medium=email&utm_campaign=171018

8 Foods An Inflammation Expert Won't Touch

Plus, exactly what to eat instead.

15 hours ago

Gretchen

Gretchenvoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

Gave a thumbs up for a blog post!

1 day ago

Ksmiles123

Ksmiles123Hello! the link below discusses medicare plans for those who are reviewing their options during this enrollment period which has just begun. http://www.aarp.org/health/medicare-insurance/info-2017/choosing-medicare-plan.html

How to Choose the Right Medicare Plan for You

Medicare open enrollment starts October 15. From Medicare Part A to Medicare Advantage learn to take charge and make the most of your Medicare choices.

1 day ago

    Made Pramana

    Made Pramanavoted on Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

    Gave a thumbs up for a blog post!

    2 days ago

    Gretchen

    Gretchen

    What a difference a day makes...our weather has changed dramatically in the last few days. It was so uncomfortably humid and now it seems Fall really has arrived! How is everyone doing? Is the decrease in humidity helping your breathing today?

    2 days ago

    Ksmiles123

    Ksmiles123Hello! An inspirational article. :)
    https://themighty.com/2017/10/inspiration-bad-day-chronic-illness-pain/

    The Words Every Chronic Illness Warrior Needs to Hear

    Mary Mattio shares some inspirational words for those with chronic illness who are fighting through tough days.

    2 days ago

    Ksmiles123

    Ksmiles123

    Hello! How are you dealing with the severe weather changes?
    It hit me like a ton on bricks going from 70 over the weekend to 40 today.
    Weather changes do not impact all NTM / Bronchiectasis patients, but greatly impact functioning on those who are affected. Also, some patients are diagnosed with asthma at a later age, combined with the diagnosis of bronchiectasis. Please discuss wheezing or any other related respiratory symptoms which occur with major weather changes with your doctor.

    2 days ago

    Merry

    Merry

    Who wants to talk about mold? ;) Partial results are in from my sputum cultures and I have two species of Aspergillus. Yuck. Still waiting to hear if the NTM has been successfully evicted.

    3 days ago

    Ksmiles123

    Ksmiles123Hello! Have you received your pneumococcal vaccination?
    Below is information on the pneumococcal vaccination. This is as important as the flu vaccination for patients with respiratory issues.https://www.cdc.gov/vaccines/vpd/pneumo/public/index.html
    I hope that you find this review helpful.

    Pneumococcal Vaccination | What You Should Know | CDC

    What everyone should know about the Pneumococcal vaccine. What are the Pneumococcal vaccines? Who should and should not get these vaccines? How well do these vaccines work, and what are the possible side effects?

    5 days ago

    Ksmiles123

    Ksmiles123Hello! I am posting this link as a reminder of the 93 questions answered at this point .
    https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers
    Do you have a specific question you would like answered?

    Question and Answers | BronchandNTM360Social

    The BronchandNTM360Social Q&A is the place to get involved in the conversation in our community. Ask your questions, learn from others and provide …

    6 days ago

      Gretchen

      Gretchenvoted on The Bronchiectasis and NTM Information Line is now open!

      Gave a thumbs up for a blog post!

      6 days ago

      Made Pramana

      Made PramanaI really like this article :)
      http://www.theunbrokensmile.com/living-a-whole-hearted-life-despite-illness/?utm_content=bufferfecc6&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

      Living A Whole-Hearted Life Despite Illness

      Living A Whole-Hearted Life Despite Illness - Join us as we discuss part 3 of enjoying a imperfect life with chronic illness,

      6 days ago

      Ksmiles123

      Ksmiles123Hello! Below is a great article on the reality of chronic illness. All 12 things may not apply for your personal case; however, I just want to convey to you that you are not alone dealing with some of the 12 items discussed in the article.
      http://masteringhealthhappiness.com/2017/01/12/important-things-you-should-know-about-chronic-illness/

      12 Important Things You Should Know About Chronic Illness

      About Chronic Illness: strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness.

      1 week ago

      Kandy

      Kandyvoted on Promoting Personal Well Being

      Gave a thumbs up for a blog post!

      1 week ago

      Kristen

      Kristencommented onThe Bronchiectasis and NTM Information Line is now open!

       So glad to see this -- what an exciting new resource for this community. Congratulations and thanks to all who made this happen....

      1 week ago

      LJ Walsh

      LJ Walshvoted on The Bronchiectasis and NTM Information Line is now open!

      Gave a thumbs up for a blog post!

      1 week ago

      Kristen

      KristenAccording to the Merriam-Webster Dictionary, Advocacy is defined as, "the act or process of supporting a cause or proposal: the act or process of advocating something." Especially dealing with "orphan" diseases and those with little public support, we all should do our part, to be a champion for our disease, lending our voice to the overall cause of forward movement in research and therapies.

      http://rareaction.org/daysofaction/

      1 week ago

      Randel

      Randelvoted on Promoting Personal Well Being

      Gave a thumbs up for a blog post!

      1 week ago

      Ksmiles123

      Ksmiles123Hello! Below is a 3 minute u-tube video which reviews bronchiectasis.
      It is a reminder of how important infection control precautions are at this time of the year. The less infections we have, the less inflammation.
      .https://bronchiectasisnewstoday.com/2017/09/25/using-simple-diagrams-explain-bronchiectasis-pathology/?utm_source=BRO+E-mail+List&utm_campaign=adf5713c45-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-adf5713c45-72116489

      Using Simple Diagrams to Explain Bronchiectasis Pathology - Bronchiectasis News Today

      Bronchiectasis can be difficult to understand if you don't have a medical background, this film explains the disease using simple diagrams.

      1 week ago

      Ksmiles123

      Ksmiles123Hello! Below is an article on inhaled Cipro. The NTM /Bronchiectasis community are making gain everyday. :)
      https://bronchiectasisnewstoday.com/2017/09/26/fda-accepts-aradigms-nda-for-linhaliq-to-treat-non-cystic-fibrosis-bronchiectasis/?utm_source=BRO+E-mail+List&utm_campaign=33eecc16ae-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-33eecc16ae-72116489

      Aradigm's NDA for Linhaliq for non-CF Bronchiectasis Accepted by FDA

      The FDA accepted for filing with priority review the NDA for Linhaliq as a therapy for non-CF bronchiectasis patients with chronic P. aeruginosa infections.

      1 week ago

        Ksmiles123

        Ksmiles123answered the question Disability

        Hello! I agree that the current medical system has many flaws which are so unfair to families like yours. I was hoping this was to be resolved with Obamacare... Did you think of asking your local social worker about other local resourcespossibilities?
        also answered the question also answered the question

        1 week ago

        Ksmiles123

        Ksmiles123

        Hello! It is a very humid day , here in Pittsburgh. I just turned the air conditioner on - sounds odd to be doing so on October 9th. However, the quality of air is greatly impacted by the current storms. Is the weather affecting you today?

        1 week ago

        sstevens

        sstevens

        Chronic lung diseases are more prevalent in older adults, as our bodies are slower to repair damage. Here is an interesting article that explores the history of asthma, genetic susceptibility and treatment in the old and young.

        https://health.usnews.com/health-care/patient-advice/articles/2017-10-06/can-young-people-get-copd?int=health-care-rec

        1 week ago

          Cbp

          CbpWorking with Gretchen today under deadlines, but we are listening to this beautiful artist (Ludovico Einaudi) and remembering to take deep breaths and appreciate what is around us. I know with chronic illness everyday can be very stressful and affect ones mood - I hope listening to this might ease some of those feelings. https://www.youtube.com/watch?v=KzOpSt5tG4Q

          Experience - Ludovico Einaudi by Angèle Dubeau & La Pietà

          Experience - Ludovico Einaudi by Ang�le Dubeau & La Piet� Taken from the album Ludovico Einaudi: Portrait Release date: March 3 2015 Click here for more info...

          1 week ago

          Ksmiles123

          Ksmiles123answered the question Daliresp, Pulmonary Rehabilitation

          Oklawowan, Hello! It does not sound as if you need pulmonary rehab based on your current established exercise routine. The other pieces of rehabilitation include nutrition and stress management. I wish you the best in enjoying your retirement and …

          1 week ago

          Ksmiles123

          Ksmiles123Hello! The article below lists five reasons why you should get flu shot.
          http://www.businessinsider.com/flu-shot-why-you-should-get-the-vaccine-2017-10?nr_email_referer=1&utm_source=Sailthru&utm_medium=email&utm_content=ScienceSelect&pt=385758&ct=Sailthru_BI_Newsletters&mt=8&utm_campaign=BI%20Science%202017-10-03&utm_term=Science%20Select%20-%20Engaged%2C%20Active%2C%20Passive%2C%20Disengaged
          Have you made your appointment for the end of this month or in early November?

          5 reasons why you should absolutely get a flu shot this year

          Getting the flu vaccine won't give you the flu, and the real reason healthy people get the vaccine isn't for their own health.

          1 week ago

          Gretchen

          Gretchencommented onThe Bronchiectasis and NTM Information Line is now open!

           This is a great resource! ...

          2 weeks ago

          Ksmiles123

          Ksmiles123Hello! The article below describes a series of truly unfortunate events. We must advocate for our needs and not accept sub par care. Please do not ever let the below scenario happen to you or your loved ones.
          http://www.empr.com/features/phone-diagnosis-prescription-medical-malpratice-c-difficile-bacteria/article/697146/2/
          Have you ever been brushed off by a practicioner, such as in the example below due to the nature of your chronic condition?

          Fatal Outcome After Clinician Prescribes Without Seeing Patient

          When a doctor can't find time in her schedule to see a patient in person, she calls in prescriptions based on conversations the patient has had with her receptionist, resulting in serious consequences for the patient.

          2 weeks ago

            Ksmiles123

            Ksmiles123Hello! More great news for the NTM /Bronchiectasis Community.
            https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-Oxide-Therapy-Granted-Orphan-Drug-Designation-by-the-U-S-Food-and-Drug-Administration-for-Treating-Infections-Caused-by-Nontuberculous-Mycobacteria-.html">https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-Oxide-Therapy-Granted-Orphan-Drug-Designation-by-the-U-S-Food-and-Drug-Administration-for-Treating-Infections-Caused-by-Nontuberculous-Mycobacteria-.html
            https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-

            AIT Therapeutics’ Inhaled Nitric Oxide Therapy Granted Orphan Drug Designation by the U.S. Food and Drug Administration for Treating Infections Caused by Nontuberculous Mycobacteria (NTM)

            The FDA’s�Office of Orphan Drug Products�grants orphan drug designation to support the development of medicines for underserved patient populations, or rare disorders, that affect fewer than 200,000 people in�the United States. Orphan drug designation will provide AIT Therapeutics with certain …

            2 weeks ago

            • DeliaThis is interesting. I've never heard of this type of therapy for NTM infections. It’s great to see companies investing in the discovery and development of new types of therapy for NTM. Thanks for sharing!2 weeks ago

            • Ksmiles123Delia,
              Yes, things are really starting to happen for bronchiectasis patients.

              I realize new patients may not understand my JOY in reading and posting these articles. I have been awaiting new therapies for over a decade.

              If you are a new patient, please post any question you wish to get an answer. We will do our best to answer you in a timely manner.
              2 weeks ago

            Ksmiles123

            Ksmiles123

            Hello! Today is Wear Pink Day for breast cancer awareness. I had envisioned support, such as this site, in addition to NTM Info& Research over a decade ago. Support and educational resources make the NTM journey much easier to handle. I am hoping and praying that we only continue to expand on these resources over the next few years. I am so much more hopeful since new therapies are in the pipeline . These new therapies and drugs will assist us in increasing awareness, education. Increased awareness will help the public understand the impact of this invisible disease. Most of us do not loose hair or have visible signs of NTM.
            Do you have any specific topics that you would like to read about on this site?

            2 weeks ago

            Ksmiles123

            Ksmiles123Hello! Below is information and a link to register for a presentation on Drinking Water Hygiene Webinar.

            With the high interest from July's "Water Faucets as a Source of ICU Patient Infection & Colonization" webinar presented by Dr. Mike Weinbren, we bring you "Biofilms - The Way Microorganisms Organize Their Social Life in Drinking Water" - October 23rd at 12:00 pm EST.

            This CE accredited webinar will be delivered by Professor Hans-Curt Flemming, Biofilm Centre at the University Duisburg-Essen, Germany. As a pioneering biofilm researcher, his fascination with biofilms and the bacteria life has fueled his more than 30 years of biofilm work and multiple publications.

            What You Will Learn:
            • Why microorganisms form biofilms and their role as a contamination source in drinking water.
            • Detection of bacteria and biofilm in water systems.
            • Occurrence and relevance of Viable But Non-culturable Cells (VBNC) by clinically-relevant bacteria.
            • Influence of plumbing materials on bacterial and biofilm growth.
            • Influence of chemical disinfection on bacterial and biofilm growth.
            https://event.on24.com/eventRegistration/EventLobbyServlet?target=reg20.jsp&partnerref=emailing1&eventid=1497514&sessionid=1&key=8DEB48BDE15DABCD69FC3EF3FC97D4BB®Tag=&sourcepage=register

            2 weeks ago

              Amy

              Amyvoted on The Bronchiectasis and NTM Information Line is now open!

              Gave a thumbs up for a blog post!

              2 weeks ago

              Gretchen

              Gretchen

              Our thoughts and prayers to everyone suffering with the senseless tragedy in Las vegas. Take a moment to offer up a prayer of gratitude for your loved ones, for all the beauty that still surrounds us as well as a prayer for the healing of our communities.

              2 weeks ago

              Elizabeth Benkert

              Elizabeth Benkertvoted on The Bronchiectasis and NTM Information Line is now open!

              Gave a thumbs up for a blog post!

              2 weeks ago

              Ksmiles123

              Ksmiles123

              Hello! Below are some myths and facts, from a Princeton Medicine Express Care Advertisement, September 2017.
              Flu season is coming — Get the facts!
              With September winding down you may think it's too early to start thinking about the flu — but it's not. It's important to be prepared and know the facts when it comes to common misconceptions about the flu.
              • MYTH: The flu vaccine can give you the flu.
              • FACT: The flu vaccine cannot give you the flu. It is made up of dead viruses, which cannot give you the flu.
              • MYTH: The flu is just a bad cold.
              • FACT: The flu is not just a bad cold. Cold symptoms last a few days while the flu can affect you for weeks. The flu can also lead to bronchitis, pneumonia and more serious conditions.
              • MYTH: You only need to get the flu vaccine once.
              • FACT: It's important to get the flu vaccine every year. The flu virus changes every year so it's important to get vaccinated annually to increase your chances of being prepared against the current year's strain of the virus.
              • MYTH: You can only get the flu in late winter.
              • FACT: You can get the flu as early as October. The flu season tends to peak between December and March, but you can get the flu as early as October or as late as May.

              I will get my flu shot at the end of October. Have you planned getting your shot?

              2 weeks ago

              Safbham

              Safbham

              I am really not doing well. Having had a Bronchoscopy to remove stuff... and being on nebulized antibiotics as well as IV antibiotics, I can't make it far without being completely winded. I climbed a staircase last night and it took 10 minutes to calm down the breathlessness. I am still coughing up a variety of colors and this is the worst I have ever been in this battle with Pseudomonas.
              Am I alone in this? I am to see my doctor nxt week (infectious disease doc) and my pulmonary doc sometime at the end of the month. My recent visit to the pulmonary had me seeing a P.N..
              My ID doc told me I need to get stuff out of my lungs and suggested breathing therapy class
              2 days a week from 9:00 till noon. I asked for a vest ... but this is what I got... I am at a loss ..
              panting constantly. Anyone have any thing like this??

              2 weeks ago

              • Click to View All Comments5 comment(s) -

              • GretchenWelcome Safbham. I am so sorry to hear of these struggles. The knowledgable participants above have given you some helpful advise. I hope you are feeling on the up and up soon and the doctors are able to support you in this.2 weeks ago

              • Elizabeth BenkertSafbham, I am so sorry to hear about how difficult the breathlessness is for you. I agree completely with Ksmiles123! If its possible, reach out to your doctors and see if you might be able to get an appointment sooner or perhaps they can refer you to additional support that is able to speak with you sooner. You're in my thoughts! Keep us posted please. 2 weeks ago

              • KandySafbham do you have any kind of med for loosing the mucus. It helps to clear the airways you can breathe better. Mucinex is one otc to help with mucus. I do hypertonic saline 7% helps me a lot. They have different strengths 3% 9% also. I sure hope you feel better. Did you go to pulmonary rehab? They teach how to over come different things for your breathing as how to breath as with steps. 1 week ago

              Made Pramana

              Made PramanaI watched someone with bronchiectasis on his Youtube channel several days ago. He consumes extra virgin olive oil. I learned from the internet that extra virgin olive oil have some benefits. It also has many calories (which I really need). So I started to incorporate extra virgin olive oil into my diet. I'm happy.
              Have a weekend everyone.

              2 weeks ago

              Vinny M

              Vinny Mvoted on The Bronchiectasis and NTM Information Line is now open!

              Gave a thumbs up for a blog post!

              2 weeks ago

              Vinny M

              Vinny Mvoted on Why Weather can Worsen your Lung Condition

              Gave a thumbs up for a blog post!

              2 weeks ago

              oklawoman

              oklawomanasked the question: Daliresp, Pulmonary Rehabilitation

              Hi, all-- Has anyone else experienced delayed side effects from Daliresp? After 4 months on Daliresp I experienced a new and most egregious side effect, and my doctor took me off the med. I had some side effects at the beginning, but they either …

              2 weeks ago

              Margo

              Margo

              A friend of mine has Bronchiectasis ( no NTM). Her pulmonary doctor guessed she try the new portable Vest by Hill-Rom. The product name is Monarch. Has anyone tried it yet?

              2 weeks ago

              Ksmiles123

              Ksmiles123Hello! The link below offers a few suggestions to prepare us for flu season.
              Please comment if you have any suggestions after reading the article?
              http://digest.naturallysavvy.com/7-simple-steps-to-get-ready-for-cold-and-flu-season/
              Have a pleasant Saturday.:)

              7 Simple Steps to Get Ready for Cold and Flu Season | Naturally Savvy

              Don’t just lock yourself up during flu season. Getting out and about can really help strengthen your immunity. How? Generally, when you go out to have fun with friends or family, you are reducing stress levels (hopefully!). Relaxing, laughing and shutting down the stress in your body allows your …

              2 weeks ago

              Ksmiles123

              Ksmiles123

              Hello! Are you getting prepared to get the flu vaccination and for flu season?
              The best time to get the flu shot is late October , early November since the peak of flu season is in January- February. In the interim, the link below is a link which offers some information on lessening the spread of germs. The old cliché, " An ounce of prevention...", definitely applies here.
              http://www.webmd.com/cold-and-flu/rm-quiz-myths-and-facts-about-spreading-germs?ecd=wnl_spr_092717_REMAIL&ctr=wnl-spr-092717-REMAIL_nsl-promo-v_1&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3d

              2 weeks ago

              Merry

              Merry

              Yesterday was bronchoscopy/lavage day. My pulmo got fluid samples from 3 areas this time. And now we wait once again to see what grows. Because I'm a fan of science fiction, I like to picture it escaping the petri dishes and taking over the lab. I might have seen The Andromeda Strain once too often as a kid. :-)

              3 weeks ago

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              About NTM

              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.