Katlyn Lenz-Zanis, of Burgettstown, was diagnosed with lupus at age 12.
Kyleigh MacGregor plans her life five years at a time.
McGregor has lupus, an incurable disease in which her immune system attacks her body's organs and tissue.
It's been a year since McGregor, 31, stepped away from her altruistic work in the community. Through EMS and firefighting, her main goal was helping others.
Today, her focus is raising her 14-month-old son.
Lupus affects about 1.5 million people in the United States and 5 million people globally, according to the Lupus Foundation of America. May is Lupus Awareness Month.
Last year, MacGregor was one of about 16,000 lupus cases diagnosed each year in America. Doctors still don't have answers for what causes it, but there may be connections to genetics, hormones, environmental factors and stress.
"I'm terrified of not having enough time on Earth with my loved ones," McGregor said. "I have the most beautiful baby boy, and I just don't want to leave him."
MacGregor's ordeal started with a strange pain that she had never felt before. She said she would pass out trying to stand up. Her primary care physician recommended she see a rheumatologist. Blood tests came back with positive markers for lupus.
MacGregor was diagnosed with systemic lupus, the most common form of the disease.
"When I have a flare-up, it feels like every bone in my body is being shattered, burning and breaking from the pain," she said. "It's a pain from my head to my toe."
Mystery of the disease
Lupus can be difficult to diagnose, said Dr. Susan Manzi, director of the Lupus Center of Excellence at the Autoimmunity Institute at Allegheny Health Network. It also is still misunderstood, as it can remain a mystery how it occurs in the body and impacts people.
"One of the things that makes it even more devastating is that it targets young women, usually between the ages of 15 and 45. That is the peak time period when the disease usually manifests itself," said Manzi, also medical director at the Lupus Foundation of America.
There is no one blood test that can diagnose the disease but rather a series of exams that must take place, as well as an examination of white blood cell and platelet counts, which would normally be low with lupus.
"It can look differently in everyone," Manzi said.
Sometimes pregnancy can trigger the disease, Manzi said, although there's no definitive reason why.
"It could be just the stress of the pregnancy or the hormonal changes during pregnancy. Patients may get a flare or present with their disease during a pregnancy or in the six months following a pregnancy," she said. "Sometimes symptoms can get worse with menstrual periods because if you look at the age group, it is usually right after you start your menses and before you go into menopause. We think there could be hormonal influence."
Lupus can be genetic. There are some correlations between lupus and hypothyroidism, a condition when the thyroid does not make enough thyroid hormones. Manzi said there's also a belief that intense sun exposure may cause lupus, that medications can trigger the disease and that stress can play a large role.
Lupus is two to three times more prevalent among women of color than white women, and those cases are likely to be more severe and can lead to kidney failure, Manzi said.
Among the disease's symptoms are "butterfly" skin rashes, pain or swelling in the joints and extreme fatigue.
"Some of the rashes can be devastating and often triggered by exposure to sun or UV radiation," Manzi said. "The rashes can be disfiguring at times with scarring and hair loss that can go with that."
With lupus, there is a lot of fluid and inflammation in the body, such as around the lining of the heart and lungs, which can cause chest pain.
"Often, every time they breathe, they will have pain in their chest because of the inflammation. They can present with kidney failure requiring dialysis. Sometimes they will present with seizures, convulsions or premature strokes. And often just profound fatigue, some unexplained low-grade fevers, weight loss. ... It can vary on how people present," Manzi said.
Anti-inflammatory steroids such as prednisone as well as disease-modifying anti-rheumatics such as hydroxychloroquine can be used for a short time, Manzi said.
There are also new therapies that are being approved and some chemotherapies, which can be used as a way to suppress the immune system.
"The key really is healthy living and nutritious diet, taking care of yourself and being tuned into your own body so that if something doesn't feel right, you seek care for it," Manzi said.
Pittsburgh is a pioneer in lupus research and treatment. AHN and UPMC each boast a Lupus Center of Excellence for treatment, and top researchers at the University of Pittsburgh are developing and testing of new therapies.
People travel from across the country to be treated here.
"We have a really world-class autoimmunity institute and two lupus centers of excellence," Manzi said. "We see people from all over the country that come here for a diagnosis and treatment, and so if you're in this region, you're fortunate."
'I was devastated'
I'Dallys Emmerson, 28, of Penn Hills, was diagnosed at 13. She was dealing with chronic fatigue, muscle pain, soreness and weakness. She could be walking upstairs and fall.
Her initial symptoms were a butterfly face rash, a skin rash that goes across the cheeks and the bridge of the nose. The shape resembles butterfly wings. She was diagnosed with systemic lupus and discoid lupus.
The continuous battles with lupus caused Emmerson to withdraw from college.
"Unfortunately, the stress of trying to learn and education and live a normal life really affected me, and my health began to decline. I had to unenroll," Emmerson said. "I was devastated."
Emmerson has an imported chest port and a filler bone graft because of bone decay caused by long-term use of steroids to treat lupus. She has had a double hip replacement and required physical therapy to learn how to walk again. She attends weekly chiropractic appointments and sauna appointments.
She has changed her lifestyle to an alkaline diet, which avoids acidic foods and prioritizes food with a pH level of 7 or above to help keep the body balanced.
She is part of the National Lupus Sister Circle, a group that meets monthly to discuss members' journey.
"This group has been a pathway to understand that I am never alone and better days are coming," she said. "It helps me push daily."
Forced to slow down
A year ago, MacGregor was active in the community, working with emergency medical services and serving as a volunteer firefighter in Springdale.
"Before, my goal was to help as many people as I could. That is why I worked in the ambulance and emergency services. Now, I just want to raise my son to the best man that he can be," she said.
MacGregor said exhaustion overwhelms her, leaving her in a constant state of fatigue. That's compounded by frequent medical appointments -- and two oral chemotherapies. She began a new treatment in April.
MacGregor still is trying to figure out how she got the disease. She said she has no genetic markers for lupus. She lives in an area with high amounts of pollution around the former Springdale smoke stacks. Pollution can be a contributing factor.
MacGregor said she believes a miscarriage in 2016 -- and the need for three blood transfusions -- also might have contributed.
Now MacGregor is seeking other opinions for treatment options.
"Maybe I can at least help someone else down the road," she said.
Offering support
Dr. Jaime Miller of Highland Park is trained in hematology and oncology. She no longer practices but volunteers with cancer patients. She was diagnosed with lupus in 2018.
"I probably had it long before then, which is a very common story that you will hear," Miller said.
In the last two years, she joined the Lupus Foundation of America and became a regional ambassador. She also is a facilitator for the Pittsburgh Lupus Support Group, the first such foundation chapter in the region.
"This group is helpful to not only people with lupus but with any connective tissue disorder," Miller said. It is also a resource for people who want to support others. "It offers a family."
The group meets on the fourth Monday of every month via Zoom, and it has three in-person meetings at the Carnegie Library of East Liberty from 6 to 7:45 p.m. in March, August and October.
During the in-person meeting in March, they discussed self-advocacy and the "Walk To End Lupus Now" in Pittsburgh in September.
Lupus gained attention in national headlines in 2013 when singer Selena Gomez announced she had the disease. Manzi said Gomez's transparency brought awareness to the plight of those fighting lupus.
"One of the interesting things about lupus is that they may not look sick," Manzi said. Seal, the singer, has discoid lupus, which affects the skin and has caused scarring on his face.
"When people are willing to speak up, that can help with awareness. It is just a matter of whether they step up to do it," Manzi said.
Katlyn Lenz-Zanis of Burgettstown was diagnosed at 12. Like Miller, she also is a regional ambassador and Pittsburgh Lupus Support Group facilitator with the Lupus Foundation of America. She co-leads the group with Miller.
Lupus runs in her family, so her diagnosis came within months of symptoms that included joint pain and rashes. Now 34, her advocacy work is fueled from never wanting anyone to feel alone.
"Support groups also give people an outlet to vent," Lenz-Zanis said, "but also a way forward with education and knowledge."