“My mother wanted to do it,” is the reason Queen Latifah gives for getting behind the documentary Beyond Breathless, a film which explores Interstitial Lung Disease (ILD), a group of serious lung diseases whose symptoms can include irreversible scarring of the lungs and difficulty breathing. In 2018, Queen Latifah, whose birth name is Dana Owens, lost “the love of her life,” her mother, Rita Owens, to scleroderma, medically known as systemic sclerosis, which is associated with ILD. 

Sharing such a personal loss and struggle was so uncharacteristic for Latifah. Keeping quiet, she reveals, was prompted by her mother. “She always wanted me to create a safe space for myself . . . so that I could have my peace and my privacy,” The Equalizer star tells EBONY. Although her mother also practiced what she preached, the lack of awareness around this disease prompted her to break that general rule.

“When it came to this diagnosis of scleroderma, and what she was dealing with, my mother decided that she wanted to do whatever she could to help other people with the same situation,” Latifah says.  That was the reason the two shared the diagnosis with People in 2014 as Latifah helmed her own self-titled talk show.

Like most folks, none of the Owens clan had heard of the disease. As a result, reports of heart disease dominated coverage of Rita Owens’ health struggles during her life and at the time of her passing on March 21, 2018. The truth is it actually took some time to get a full diagnosis for the beloved high school teacher who taught at New Jersey’s Irvington High School, which is also Latifah’s alma mater. That journey, Latifah says “simply came from my mom passing out in school … and I was called to the hospital.”

“It was so difficult just to get a diagnosis,” Latifah recalls. “When we went to the hospital for the first time, it was like ‘your heart is not pumping the way it should.’ There were drugs that she was given [that did get a response] but there was something that wasn't right, other things weren't coming up right. Something was going on with those lungs. And once they started to look at the lungs and what was happening, that's when we found this interstitial lung disease.”

“It’s basically, a scarring of the lungs, and your lungs have to be soft and supple in order to [receive] oxygen. And so eventually, my mom had to go on oxygen,” Latifah continues. “This was a big learning experience for me and my family. We hadn't heard of these things. We had to do research.”

ILD, as Beyond Breathless shows through the other stories featured in the special, doesn’t just affect one group. “So many people across all ages, all racial lines and genders are affected by this group of illnesses,” she says. Raising awareness about scleroderma specifically, she says “oddly enough” brought her and late comedian Bob Saget, who became a longtime supporter of the Scleroderma Research Foundation after his sister passed away from the disease, together, along with many other people.

During COVID, Latifah admits that it can be easy to confuse signs of ILD. “Some of the symptoms like breathlessness, dry, persistent coughs, I know can be tricky right now in the time that we’re in, but you still have to go to the doctor,” she insists, suggesting folks visit the website Lungs & You for more information. “The earlier that you get a diagnosis, it can really, really make a big difference.

In the documentary, Latifah’s cousin Tina, Ms. Owens’ caregiver, joins her in sharing stories about their collective struggles with the disease. Including her cousin in the story was important to Latifah who welcomes the opportunity to bring attention to the critical role caregivers play. “We know how difficult it is for someone to have to be a caregiver,” she says. “You get burnt out; you get exhausted; you get tired. You don't sometimes have time to take care of yourself because you're so busy taking care of your loved one.”

Joining forces with pharmaceutical company Boehringer Ingelheim, whose origins date back to the late 1800s, for Beyond Breathless and other initiatives, “wasn’t about having a paid partnership. It wasn’t about some drug invented that would help people [though] those things are in the works,” says Latifah. “This was more about bringing attention to something that a lot of people did not know about.” 

Speaking of her family’s experiences as well as those of the other families included, Latifah says “Beyond Breathless is just a way for us to give you a glimpse into our lives and what it was like for us and, hopefully, make it a bit easier for others who may have experienced this or, hopefully, give them a chance to catch it before it gets too far down the line.”

You can also catch the documentary on YouTube.

Ronda Racha Penrice is the author of Black American History For Dummies and editor of Cracking The Wire During Black Lives Matter.