For World TB Day this year, instead of playing a game to raise awareness (see last year’s post World TB Day at DNA Genotek), we asked our DNA Genotek colleagues to take a moment with friends and family to see how TB has impacted their lives. Many people, especially in more developed countries, might believe that tuberculosis has been eradicated. But for those of us who are more active in the TB community, we know we are still a long way from reaching our goal of ending TB.
Some of our colleagues discovered they have direct relatives who were affected by TB; whilst others took a moment to reflect on what it means to them to be part of the incredible fight against tuberculosis. Here are some of their stories:
Pat and Ian’s story
Our maternal grandfather became infected with TB as a young man in Canada. He contracted TB when he was a medical student at the University of Toronto around 1930. No one knows the source of exposure and the details are a bit foggy, but he became very seriously ill. He had to suspend medical school, was hospitalized and eventually had to have one lung lobe surgically removed. His illness and recovery were long and isolating. He spent months at home in Exeter, Ontario. A lot of that time was spent on bed rest; any other treatments he received aren’t known but we’re guessing they would have been minimal at the time.
The silver lining is what our grandfather was able to do with his recovery time and the work he went on to do in his life. He contacted a scholar who came to his house and counseled him on many educational topics. This way he could read and learn everything he possibly could about history and other subjects to achieve a well rounded, worldly knowledge.
Ultimately, the University of Toronto gave our grandfather his final year of medical school based on performance up to the time he became sick. He was not allowed to intern due to his disease and as a result, he went on to specialize in pathology. In the years that followed, we believe he worked/trained at the TB sanatorium in Saranac Lake, NY. He married our grandmother there, and he returned to Canada to work as a staff pathologist at the TB sanatorium in Hamilton, Ontario before World War II.
During the war, he was in charge of running the blood transfusion service in England, supplying blood to all the injured troops. When he returned from England, he established the first free blood transfusion service in Canada, and travelled across the country setting up depots in each province.
Alexandra’s story
My great aunt died of TB. She died in a quarantined room in her family home. My family doesn’t know how she contracted TB; at that time, it was a normal occurrence that someone you know might contract TB. She was 16 years old and was the only daughter in a family of 6 children. It broke my great grandmother’s heart to lose her only daughter. My grandfather (her brother) was only around 6 years old at the time. No one alive even remembers her name…
Most people in Canada don’t think about TB anymore. When people ask me what I do for work and I tell them I work in the TB field, they often follow up with “isn’t that eradicated?” Surprisingly, I tell people TB recently surpassed AIDS as the world’s most deadly infectious disease. In many countries in the world, TB is even more common than it was at the time of my great aunt’s death.
Patricia’s TB Story
I started working in the TB field, by chance, in 1998 when I found a group working in molecular biology at the State Reference Lab in Brazil (where I am from). The main projects I worked on were molecular diagnosis and epidemiology of TB. I had hardly heard of TB before this, despite the fact that Brazil is a high burden country for the disease.
During my work to obtain a Ph.D., I collected sputum samples and interviewed patients at the outpatient clinic of the TB Reference Hospital. That was when I really started to learn about tuberculosis. It was a period of great learning, but was also emotionally depleting because of all the sad stories I heard from those patients that suffered not only from TB, but many other misfortunes related to their socioeconomic condition.
Later on, I was invited to work at the National Tuberculosis Program as a consultant for laboratory and research. During that time, I learned about the management of TB programs and all the difficulties to properly allocate resources to improve TB care in a high burden country. In 2015, I decided to look for new challenges and it was then that I joined the TB team at DNA Genotek.
In February 2016, my TB story become more personal when my aunt started feeling very sick, had weight loss and was always short of breath. She was diagnosed with TB and started first line treatment. She worked as an auxiliary nurse in a hospital; that’s most likely where she got infected. After 3 months of treatment, with many side effects that made her feel very sick, her health condition was still not improving and she had lost over 30 pounds by this point. The doctors decided to send her to the TB Reference Hospital to initiate the second line treatment for drug resistant TB.
My aunt is still in treatment for a total duration of 18 months. She has now gained weight, her general health condition is good. She is very glad to have overcome the first phase of treatment which entailed getting injectable anti-TB drugs every single day. She will get a medical release in November 2017 and I will plan a party to celebrate. Going through a treatment that long and hard, coping with all side effects and risks deserves a big celebration!
Kerry’s Story
My grandmother was a student nurse in a sanatorium in the 1940's. My father recalls her saying that in those days there was no cure for TB, just the expectation that patients would get well with good care. They felt fresh air would be good for the patients, so the nurses would bundle the patients up and get them outside as much as possible. My grandmother also spoke of the belief, at the time, that TB often struck the poor, those who did not have enough good food to eat or lived in unsanitary conditions, and those who took better care of themselves had a better immune system. I'm not sure if there was any scientific basis for these conclusions, but I gather it was the view that most people had at the time.
Kaitlyn’s story
Before I started working in the tuberculosis field, I had the same perception of the disease as a lot of other people in developed countries. The risk of getting infected with TB hasn’t been a real concern for most of us for decades – what, TB is still a thing? I hear this a lot when meeting new people and explaining what I do for work. Even with a background in health science, I was oblivious to the global burden of TB and its significant mortality rates. When I thought of TB, I thought of characters from movies in popular culture, like Moulin Rouge and Angela’s Ashes, who passed away from ‘consumption’. But I never thought of TB in the current global context.
When it comes to other major infectious diseases, including AIDS and malaria, we know that these are leading causes of death worldwide, even if we don’t come across them on a daily basis. However, the TB community has been much quieter, with their voices seldom heard in North America. The devastating reality of multi-drug–resistance and extensively drug-resistance TB are even less known by the general population.
I want to use World TB Day to give a voice to the disease. We may not have Prince Harry or Rihanna, or the countless other celebrities who advocate for AIDS awareness fighting on TB’s behalf. But that doesn’t mean it should be forgotten or ignored. It is time for the voices of the TB community to be heard. For everyone who has been affected by the disease, either personally, maybe a friend, family member or loved one, it is time to share your story. For all of those fighting effortlessly to find a better cure, discover a vaccine, improve diagnosis, build better support systems and improve the lives of those living with the disease, we encourage you to speak up. I have met countless amazing people since I started working in the TB community. I want everyone to know about them and their stories! Let’s educate people, like my former-self, who are unaware. Let’s not let TB be forgotten. Share your own stories and spread the word.