Illustration of woman coughing in her kitchen.

A Thousand Words About NTM

A collaboration with patients

A Thousand Words About NTM is an initiative designed to help illuminate the suffering of people living with nontuberculous mycobacterial (NTM) lung disease. We paired NTM patients with artists or animators from around the world. Our goal was to create one-of-a-kind original artwork and animations to help patients communicate what they’ve often struggled to put into words—the long, difficult journey to an NTM diagnosis.

See the impact of NTM on 3 people living with the disease

MEET BARBARA

Barbara was a hiker and traveler, always on the go. Her first symptom of NTM lung disease was a serious cough that stopped her from leaving the house. The cough was so violent she broke 2 ribs.

When Barbara was diagnosed with NTM lung disease after 2 years of coughing, she felt relief. She began educating herself about the disease and made some important changes to her life, including beginning treatment.

The search for A
diagnosis

Transcript

[INSPIRING MUSIC]

I grew up in Indiana and lived in Washington, DC, for 40 years. I hiked a lot. I went to the Grand Canyon. I went overseas, to Dominican Republic, to Africa. I just didn't sit at home very much.

My first symptoms of NTM were just a cough, and it wasn't a dry, day-by-day coughing. It was kind of a violent coughing and spasms. And so it was kind of like "grab your ribs and just cough, cough, cough." And at one point, I broke two ribs, which is a very painful injury.

I could no longer go out to lunch with friends because I would cough all through lunch. Couldn't go out to a movie theater, couldn't go to church. I would cough all through the service. I just felt lonely and scared.

I went to 15 different doctors in various medical specialties-- pulmonologists, cardiologists, allergists, infectious disease doctors. I coughed for over two years before I was finally diagnosed with this disease. I went to a major hospital that focused on lung disease, and it was at that hospital, as soon as I walked in the door, they knew I had NTM. It was almost the first thing out of their mouths.

They said, you're an older woman. You're slender. You've been coughing for a couple of years now, and you have underlying bronchiectasis. I fit the pattern. Finally, somebody, somewhere, put all the pieces of the puzzle together, and it was almost a joyous experience to know what I had, that I wasn't crazy.

Learn how Barbara’s quest for answers, which took her more than 15 different doctors and over 2 years, finally paid off.

Managing life
with NTM

Transcript

[INSPIRING MUSIC]

When I was finally diagnosed with NTM, it felt just like a huge weight being lifted off my shoulders. I had found the answer. It had taken two years and 15 doctors. I don't remember so much of what these doctors said, but I remember feeling deeply cared about. And I will always remember that. I had never, of course, met anybody else that had NTM, but I was no longer so lonely and isolated. There were other people out there.

After I was diagnosed with NTM, I turned to the internet. I researched everything I could on NTM. I wanted to know how I got it. I also started doing lung clearance, which meant every day I clean out my lungs. I use a little saline, and I blow into a device that shakes my airways. And I'm able to get a lot of mucus up. So that reduced my coughing symptoms probably by 50%, so that was key.

When we decided to treat NTM with antibiotic therapy, I was really, really scared. So I researched various drugs that were used to treat NTM. I researched the side effects. And all that served not only to give me more information, which was good, but it also served to reduce a lot of the anxiety. After doing research, I thought, well, maybe I can handle this. So many other patients had seemed to be able to handle it, and I had hope-- hope that life could be better.

Few other lingering symptoms, I think it's important to find out why. And that may take some perseverance on your part. It may mean going to a specialist. It may mean going to another city that has a medical center, to talk with people there about your lingering symptoms. So don't give up. There's hope. It's a journey, and I would say your part on the journey is to persevere, to find those people that could talk with you, whether they're a patient or a doctor.

Find out how Barbara overcame the obstacles of NTM and hear her advice for others who may have the disease.

INSPIRED BY BARBARA’S STORY UNBREAKABLE

Transcript

[SOMBRE MUSIC PLAYING]

[COUGHS] [GASPS]

[SNEEZES]

When my cough wouldn't go away, I saw about 20 different doctors before I finally had my answer.

[SOMBRE MUSIC PLAYING]

Barbara’s long and frustrating misdiagnosis took her from doctor to doctor with no one having the right expertise to help. Watch “Unbreakable,” an animation inspired by Barbara’s story.

MEET BETH

Beth moved out West to enjoy the great outdoors. She was living her dream as a successful spokesperson and nature enthusiast. But she soon developed a debilitating cough that interrupted both her personal and professional life.

When Beth first learned she had NTM lung disease, she felt frightened and alone. But she made some important lifestyle changes, started treatment, and found a community of support.

Getting the right
diagnosis

Transcript

[INSPIRING MUSIC]

I live in Colorado, in the foothills west of Boulder. I love to hike and backpack and camp and just enjoy nature. My family is really my group of friends and my colleagues at work. I've had a wonderful career in marketing and public relations, which often involved being a spokesperson, so it was hard for me when all of a sudden I developed this cough that would never stop. You can imagine trying to be a spokesperson and being enthusiastic about a product or a program, and all I'm doing is coughing.

Before I was diagnosed with NTM disease, I was sick for about two years, just coughing all the time and experiencing a lot of fatigue and losing weight, and it came after about a bronchitis that just never went away. And so when I went to my primary care doctor, she said, it looks like you have asthma. So she gave me asthma medications, and that didn't solve any of my symptoms, didn't make the symptoms go away, certainly didn't help my cough. So I just lived with this cough thinking, well, it'll get better. It'll get better. And it never did. In fact, it got worse.

I thought, there's got to be a way to deal with this and to help my symptoms. I was just determined to find a way. Finally, a friend of mine said, you need to go to a respiratory specialist. One of the real advantages of going to a respiratory specialist is that they start over from the very beginning. They look at all your symptoms, and they test you for everything. And that's when I found out that I had NTM lung disease.

After being sick for so long, with all the coughing and fatigue and weight loss-- this had gone on for two whole years. It was very frustrating, so to finally get a diagnosis was really a relief. It was something that I could define now, I could take medication for, that I believed-- I had hope for a good outcome. So I was relieved.

Follow Beth’s journey and learn how she found the help she needed.

Finding treatment
and support

Transcript

[INSPIRING MUSIC]

When I was diagnosed with NTM disease, it sounded very scary to me. I was alone. I was frightened. I was crying. I just felt terrible. I'd never heard of this disease. It's really a horrible experience to go through alone.

I felt it was really important to learn everything I could about the disease. And so I researched it online, mostly. I found respiratory specialist sites and several very good sites. My respiratory specialist put me on treatment pretty much right away. She put me on antibiotics and had me go through classes to teach me about changes that I would need to make in my diet and exercise and lifestyle changes.

My respiratory specialist really spent time with me, educating me about NTM lung disease and all that I would be going through with treatment and medication. And I felt like I finally had found someone who really knew what I needed not only to get well, or try to get well, but to at least get better and to manage this disease.

I think it's really important to be connected with other people who have NTM lung disease. Knowing that I have a support group to turn to any time I want to-- all I have to do is go online and email some of my friends in the group-- that I can learn from and that I can share my experiences with, it's just wonderful. It means a great deal to me. It's actually very rewarding. I feel like maybe I can help somebody with this, and I know they're helping me.

See how connecting with people who have NTM brightened Beth’s experience.

INSPIRED BY BETH’S STORY TRAPPED

Transcript

[MUSIC PLAYING]

OK guys so--

[MUSIC PLAYING]

Beth’s repetitive NTM symptoms made her feel trapped in an endless cycle of despair that took a toll on her personal and professional life. Watch “Trapped,” an animation inspired by Beth’s story.

MEET DEBBIE

Debbie knew something was wrong when her coughing started to consume her life. With symptoms hard to ignore, Debbie found herself self-conscious and angry. After 15 years of symptoms, she was finally diagnosed with NTM lung disease.

Debbie’s attitude toward her NTM lung disease diagnosis changed her outlook on life. She knew that being her own advocate, asking the right questions, and staying true to her beliefs would pay off.

The signs and
symptoms

Transcript

[INSPIRING MUSIC]

I'm Debbie. I'm married. I have two children and four granddaughters-- teenagers. They're a lot of fun. Before I had symptoms, I had lots of fun. I enjoyed skiing, hiking, golf. You name it, I would try it. The first symptoms I experienced were colds that lasted for months. In fact, one time, one episode, it lasted for a year and a half, and that included the cough as well.

When I was experiencing symptoms, I was coughing way more than I wanted to. So I'd be out in public, and I'd get these dirty looks from people that didn't know what was happening. And I assume they thought I was contagious. I felt very sad and angry. And I felt very self-conscious as well. And I was not happy at all that people were giving me dirty looks and stares when this was something I couldn't help.

I was struggling with these symptoms for about 15 years, on and off, and I was just in the mode that, OK, I'm having an exacerbation of some sort. And I'll just roll with it, and it'll go away. The tipping point was at a family dinner. I don't know what happened to me, but I just couldn't function. I couldn't sit there at the family dinner. I was feeling chills, fever, and crushing fatigue, which was ultimately diagnosed as pneumonia. And I had to go upstairs and go to bed for the entire dinner. I felt awful. And I was disappointed because I really wanted to be with my family, and I couldn't be.

I visited the pulmonologist, and he decided to give me a couple of tests. One of them was a bronchoscopy. I still thought deep down that it was going to be nothing, because that's how I go into all testing. But this time, I was surprised. When the doctor told me I had something called NTM, something I had never heard of, but when he explained what it was, I was shocked and then became depressed for a period of time.

Well, after I got through the initial shock, I was able to get some information from my doctor and from a medical center that specializes in it. Now we put a name to this disease, and I have a course of action that I can take. And maybe I'll even feel better.

Listen to how Debbie found hope when she found the answer for her symptoms.

A future with NTM

Transcript

I felt a great relief knowing that I could do something about NTM, the condition that I now could put a name to. And I was very optimistic. I was told that I was in initial stages. And that was a definite positive. So I decided to look at this that, OK, I'm going to get this, it's not going to get me.

The knowledge of the medical community has come a long way. When I was first diagnosed, there was very little information out there and not that many resources, except at specialty centers. Today, there are people who are doing lots of research. And the doctors who know about NTM are teaching other doctors. And they're also collaborating with each other. So that's really nice to see. It's a very close community among physicians, researchers, scientists, and patients.

Being in a support group has been invaluable for me. I have met so many kind and wonderful, as well as intelligent people, who are interested in learning as much as they can. I have gotten so much out of these people much more than I ever imagined. And I'm so grateful for that.

What had happened was I had gone to a family dinner. And I was totally knocked out by fatigue, sweats, chills, fever, which was ultimately diagnosed as pneumonia. I was struggling with these symptoms for about 15 years. If you were having a chronic cough or a cold that didn't go away, and it just stayed with you, don't ignore it, be proactive, get checked, go to somebody who has knowledge, and make sure you ask for the tests that are necessary to diagnose NTM.

Also, be optimistic that you're going to overcome this disease because I think attitude is a very important part. Dealing with NTM has taught me so much, that I'm stronger than I realize and that I surprised myself in the sense that I can do all of this and still lead a relatively normal life. And I'm grateful for that.

See what Debbie has to say about the progress she's made.

INSPIRED BY Debbie’S STORY ISOLATION

Transcript

Just hours on the timer, attention on the fire. We'll braise and flambe. It's such a glorious day. My dinner party is today.

Knives, at the ready. Pots, simmer steady. Candles on, lights put in.

All my guests will never want to leave. Just remember, this is our big shot.

My stomach is in knot.

It's so fine to wine and dine with dear old friends. They're not coming. Somehow, I cannot hide what lingers in sight. So fatigued, but I really, really tried. How like a fool I feel, thinking a single meal wouldn't become a sad ordeal. All our grand plans have truly come undone, and my lovely dinner party is now a table for one.

People thought my cough meant I was contagious. It made me feel sad and self-conscious.

Debbie’s undiagnosed NTM symptoms made her feel isolated and alone, driving away her friends and family. Watch “Isolation,” an animation inspired by Debbie’s story.