Queen Latifah is someone who values privacy. It is something her late mom, Rita Owens, taught her the importance of, and it’s allowed her to maintain some peace for herself in a hectic, often invasive industry. But something that she wants to be open about, as much as possible, is her mother’s battle with systemic sclerosis associated interstitial lung disease (ILD). It was the one thing both the star and her mom wanted to tell the world about.
“My mother suffered from scleroderma and my mother was a very private person,” she tells ESSENCE. “But when it came to this, she decided that she wanted to share her story. And from the moment that we shared her story, it was almost shocking how many people started to come up to me, come up to her and let us know that they were either experiencing the same things or they had family members who were. We had no idea.”
ILD encompasses the diseases (about 200) that cause scarring, or fibrosis, of the lungs. The scarring can make it hard to breathe, and the damage usually isn’t reversible, causing it to get worse over time. In the U.S., idiopathic pulmonary fibrosis has been found to be the most prevalent ILD.
“I had a talk show at the time. And from the moment we talked about this, all of these people who were in my audience every day, or every few days, started to come up to me after the show and say, ‘Hey, my mom has this.’ Or show me their hands. Or to tell me that they were experiencing things. And it was just like, wow,” she recalls.
That’s why it was important for the Emmy winner to use her platform to provide support to those dealing with ILD and family members attempting to support those with it.
Mother and daughter spoke up together, doing so until Owens passed from scleroderma in 2018. In the years since, the actress has worked on a documentary for A&E, Beyond Breathless, in partnership with pharmaceutical company Boehringer Ingelheim, to provide awareness. People of all ages open up about being diagnosed with diseases that led to ILD, or losing loved ones to it and how they’ve coped. It’s an eye-opener for those who may have never even heard of ILD, which does impact more African Americans than we know.
“‘[The documentary] is not a long one, but it’s an important one. And it’s ahead of Rare Disease Day and a lot of things don’t get attention and they deserve this attention, because a lot of people, a lot more people suffer with these diseases than people are aware of,” she says. “So if [people] get a peek at it, then they can go to lungsandyou.com and get more information or reach out to their doctors. But at least there’ll be some more awareness about it.”
Of the many voices in the film, including former MLB star Bernie Williams who narrarates, Latifah, her family and those who cared for her mom get to speak about Owens and their experience being of support to her mom as caregivers — as well as support to one another.
“My cousin, Tina was part of it. My sister, Raven was part of it. My best friend, Tammy, and her nurse. And sometimes it would be good because I could just come over and be her daughter, not her caregiver. And then sometimes her niece, Tina could come over and just be her niece and I could be the caregiver. So there were ways that we learned over the years how we could just be family members and just make life as normal as possible,” she says.
And while Latifah is a part of the project, she gladly takes a backseat to allow other families to share their story, to ensure that she’s doing the work that her mother wanted.
“This is not about me. This has nothing to do with Queen Latifah. This is about Rita L. Owens,” she says. “This is about Rita’s story. And Rita’s story is many people’s story. So for her to want to share that, it meant a lot to me, it means a lot to me to continue to do the best that I can to make people aware of it and to let them know they’re not alone.”
You can view Beyond Breathless below on YouTube and visit lungsandyou.com for more information on interstitial lung disease.