Black cystic fibrosis patient shares struggles with diagnosis, triumph in finding Colorado specialist
Cystic fibrosis is a crippling disease, and anybody of any ethnicity can get it. But for Black people and people of color, it often gets overlooked or misdiagnosed.
Rachel Alder has lived it for herself. "I have always had some symptoms of something going on really from infancy. As I was growing up, we didn't have a physician who really noted the odd symptoms."
Alder says she simply wrote off her symptoms as being young or having growing pains.
"The year I graduated high school, 2014, was the year I really started to have problems GI-wise. I started going to doctors for help, specialists, things like that. I didn't really feel heard. I felt like I was getting worse, not better. I was on some very powerful drugs for a number of years, and I felt in my gut that wasn't the right track, the right diagnosis and really tried to advocate for myself," she shared with CBS News Colorado anchor Mekialaya White over Zoom from her home in Utah.
Alder then started documenting her journey on TikTok. After six hospitalizations, one round of sepsis, two hip surgeries, and even emergency surgery, doctors in Utah still couldn't give her definitive answers.
"I was kind of put in this gray zone of respiratory disorders. They thought I was a carrier but didn't have CF," she said. "Ultimately, it led to the hospitalization this last January which was 10 or 11 days and they sent me home – there was nothing new that we were going to do – and I felt really scared for my health my future my life. And in kind of a desperation, I reached out to a CF support group on Facebook."
Eventually, she got the help she needed at National Jewish Health here in Colorado.
"Someone connected me to the National Organization of African Americans with cystic fibrosis. And I was able to connect with Dr. Taylor Cousar. The more I learned, the more I felt this is where I need to go to make it happen. (My family) packed up and drove to Colorado and ended up there in January of this year – and in one day, I was able to get what I needed in the last two years, my whole life the care I should've been given," she expressed.
Her immediate relief was evident in a subsequent TikTok video she posted after her first appointment.
"I just met with a really, really amazing doctor, Dr. Jennifer Taylor-Cousar, who I can confidently say saved my life," she said.
Dr. Taylor-Cousar helped Alder discover her ultimate diagnosis, cystic fibrosis. And she says stories like hers aren't uncommon.
"I've been doing CF for more than 20 years and from the time I was taught in medical school, and I was taught it was a disease that impacted white people. As I moved forward in my career, I started to bring this up at different tables," Taylor-Cousar said.
Taylor-Cousar explains the symptoms can be mistaken for something else.
"Loose stools, eating and no weight gain, runny nose, difficulty breathing, patients can also need oxygen. Infections that just don't get better. People of color just get diagnosed with asthma or COPD if you have those breathing problems," she said.
So, she says she's working to alter systematic biases.
"We don't want people to be missed in their diagnosis because that's huge in the health inequity. The great Maya Angelou said, 'Do your best until you know better. Then, when you know better, do better.' And we are at that point in medicine. We know better so we need to do better," she said.
Alder also says she is beyond grateful she got a second opinion. Now, she fights her battle daily with a community rallying around her.
"Finding that community has been very empowering to collectively raise that voice. Be the person to make the change. And find someone that sees you. When you do, you'll know," she said with a smile. "To not only find an institution where the patient is firs, but find someone like Dr. Taylor-Cousar that sees you and someone that looks like you, that is something that means more than I can express in words," Alder said.
Taylor-Cousar became teary-eyed. "It's a privilege to be a part of your care," she replied.
To get in touch with National Jewish Health's cystic fibrosis specialists click here: https://bit.ly/3ZazJBq
