LaToya’s diagnosis of primary biliary cholangitis (PBC) explained her constant tiredness, but managing that symptom is a constant challenge that forces her to make compromises in how she divides her time—which those closest to her can find hard to understand. Here, with her sister Carletta, she explains how fatigue shapes her new normal

 

 

“Anyone who meets LaToya instantly learns how high-energy she is. She is hard-working, passionate about helping others and always on the go” – Carletta

 

In January 2019 LaToya found that her get-up-and-go had faded. “I knew that there was something going on with my body that caused me to feel much more fatigued and tired than normal.” It wasn’t just the bitter Chicago winter or the extra weight she was carrying that was causing her to feel this sense of “dragging” through her days, she decided.

Her doctor ran some tests that showed the levels of alkaline phosphatase levels in her blood were elevated. “He thought we should continue to monitor that, but he didn’t really have any diagnosis,” LaToya says.

After three months of feeling constantly tired and not having the energy to do her normal activities, she pressed her doctor for answers. “I finally said to him that something is going on and I really need to know the next steps. He said something was going on with my liver or bones. Because I never really had issues with my bones, I thought, well, let’s try the liver route first.”

Through her medical insurance LaToya was able to arrange a referral to her own choice of liver specialist in the area. She called on a Friday and had an appointment the following Monday, which led to testing before the week was out.

LaToya kept a watchful eye on her phone, waiting for the test results to be updated on her electronic health record. Within days a notification flashed up on her phone, bringing her the test results and her diagnosis: primary biliary cholangitis.

 

“It freaked me out because I’d never heard of the term. I went to Dr Google—who’s really not our friend when we’re already anxious about something going on with our body—and what I read about primary biliary cholangitis was really frightening.”

 

After a sleepless night LaToya arranged an appointment with her doctor, who gave her a much firmer grasp of the condition. Still, she felt a great deal of fear and uncertainty. “I didn’t share my diagnosis with my family immediately, because I wanted to understand exactly what PBC meant for me, depending on where I was in this disease.”

 

“When I heard about LaToya’s diagnosis, I was afraid and worried about what was going to happen to my sister.” – Carletta

 

LaToya says she is really thankful that her condition is being managed. She is being treated, and her alkaline phosphatase (ALP) levels are within the normal range. A liver biopsy showed no scarring to her liver. However, she still experiences fatigue and that’s taking its toll.

A strong believer in the importance of servant leadership (focusing on the needs of others to serve the greater good), LaToya energetically applies that philosophy to her job and volunteering. But with PBC this is now a tougher challenge.

“I just know that the way my body is operating with the fatigue, I have to keep going. I get up in the morning, I hit the ground running and I make sure that my schedule is pretty back-to-back. And then when it’s time for me to slow down, I have to stop and understand that’s the capacity I have at that particular moment.”

 

“And then at the end of the day when I crash, I really do crash. That’s the part that I have to learn to live with.”

 

Explaining her diagnosis to family and friends and getting them to understand her fatigue is a struggle, she says. “My family and friends do not understand it. I have always been high-energy, and I have made it a point to keep going, so they don’t understand that PBC does impact me. When I say ‘No’ to them, it’s almost like, ‘Well, why? You can do all these other things.’” Her doctors, too, seem unfamiliar with PBC and its burden, she says. “They don’t quite have the resources to help people with PBC.”

 

“On the one hand we know LaToya has the disease, but on the other it’s invisible—and she goes above and beyond to keep going, so we rarely understand the impact. We do respect her boundaries when she sets them and try to be mindful of her new normal.” – Carletta

 

As LaToya continues to learn to live with her condition, she is increasingly prioritising self-care to keep her energy levels up and maintain her mental health. “It’s about managing my stress, working out and being more physically fit—I’ve lost about 60 pounds (27kg) since I got diagnosed.” Losing that extra weight, which she has carried since her teens, has helped her feel better. She says that volunteering with the PBC Foundation and the American Liver Foundation has proved to be valuable for her mental health too.

 

 

 

“I’m really trying to connect folks here in the United States with resources when they first get diagnosed, so that they’re not on their own, looking for support groups, Googling, looking for information and resources in all the wrong places.”

 

Not having complete information about PBC is a definite barrier for patients, LaToya says, and helping to address that is one of her goals. She’s also concerned about the social stigma that still seems to be attached to having a liver disease. “There’s an assumption that you’re an alcoholic. And I’m not. I’ve never been an alcoholic. But that stigma exists and has an impact.”

LaToya is also troubled by the unhelpful stereotype that PBC only affects older white women. “I am middle-aged but I’m definitely not Caucasian,” she says. “I’d love to see folks understand that PBC is something that can happen to any of us: it’s not just older, white women, and it’s not about being an alcoholic. It’s an autoimmune condition that can impact anyone and, from my understanding, it’s really not clear as to how you can develop it.”

In September 2022 LaToya had the opportunity to attend the PBC Foundation’s Annual Volunteer Conference in Edinburgh, Scotland, where she met other advocates with PBC. “I have friends and family that love me, and I know they are supportive, but they don’t get it and they don’t understand… It was life-changing to be in the room with others that have the condition I live with every day.” Such was the depth of connection that LaToya felt with her fellow-volunteers that it was only on the flight back from Scotland that she realised she’d been the only African American there.

 

 

“Since I’ve met others with PBC, I’ve learned that the condition impacts each of us differently depending on when we are diagnosed and what level of damage has occurred to the liver. Many of the ladies I’ve met locally are dealing with itching, chronic fatigue, other auto-immune disorders such as Sjogren’s syndrome, and liver transplant.

“I’m certainly blessed that my PBC is at stage 1–2 and there’s no damage to my liver at this time. I’m hoping that if I continue the treatment and remain physically active I won’t need a liver transplant anytime soon.”

One of LaToya’s goals this year is to set up a local support group for people with PBC and to host an awareness day event in Chicago for clinicians, caregivers and people living with the condition. She explains: “I want others that have PBC and other rare conditions to know that there’s a support group out there for them, and that connecting with it can be such an amazing thing. I hope others get the opportunity to experience that as well.”

 

“I am incredibly proud of my sister for taking on this new challenge as her life’s work by encouraging others to advocate for themselves with their doctors, recognise when changes are occurring with their bodies and seek out support wherever in the world they can find it. Her passion is around getting the word out about this disease” – Carletta

 

 

---

 

Disclaimer: Any medical information included in this article is not intended to form medical advice. It must NOT be used as a tool to help understand or assess potential options around diagnosis and treatment. Patients must consult a doctor to receive medical advice, diagnosis and treatment that is appropriate to their specific and unique circumstances. The article does not include all information about the condition, treatments, medications, side effects or risks that may apply to a specific patient. Patients must speak with a health care provider for further information about these. This information does not endorse any treatments or medications as safe, effective or approved for treating any specific patient.

***

Financial support: This digital spotlight, produced in collaboration with Pulse Infoframe, has been made possible with financial support from GSK. With the exception of a factual accuracy check, GSK and Pulse Infoframe have had no editorial input or control over the content of this article, which was independently created by RARE Revolution Magazine. All opinions are those of the contributors and there was no transfer of value for participation. RARE Revolution Magazine and GSK are not responsible for the content of any external sites linked to or referred to within this article. RARE Revolution Magazine retains all copyright.

 

---