Kyleigh Macgregor plans his life for five years at the same time.
McGregor has a lupus, an incurable disease in which his immune system attacks the organs and tissues of his body.
McGregor, 31, has moved away from his altruistic work in the community for a year, for a year. Thanks to EMS and fire fighting, its main objective was to help others.
Today, his goal is to raise his 14 month old son.
The lupus affects around 1.5 million people in the United States and 5 million people worldwide, according to the lupus foundation of America. May is the month of awareness of lupus.
Last year, Macgregor was one of the approximately 16,000 cases of lupus diagnosed each year in America. Doctors still have no answers to what causes them, but there can be links with genetics, hormones, environmental factors and stress.
“I am terrified not to have enough time on earth with my relatives,” said McGregor. “I have the most beautiful little boy, and I just don’t want to leave him.”
Macgregor’s test began with a strange pain that she had never felt before. She said she would vanish while trying to get up. His primary care doctor recommended that he see a rheumatologist. Blood tests have returned with positive markers for lupus.
Macgregor was diagnosed with a systemic lupus, the most common form of the disease.
“When I have a push, I have the impression that each bone of my body is broken, burning and breaking from pain,” she said. “It is a pain from my head to my toe.”
Mystery of illness
The lupus can be difficult to diagnose, said Dr. Susan Manzi, director of the Lupus Center of Excellence at the Autoimmunity Institute in Allegheny Health Network. It is also misunderstood, because it can remain a mystery how it occurs in the body and has an impact on people.
“One of the things that makes it even more devastating is that it targets young women, generally between 15 and 45 years old. This is the peak period when the disease is generally manifested, “said Manzi, also medical director of the Lupus Foundation of America.
There is no blood test that can diagnose the disease, but rather a series of exams that must take place, as well as an examination of the number of white blood cells and platelets, which would normally be low with lupus.
“It may seem differently in everyone,” said Manzi.
Sometimes pregnancy can trigger the disease, said Manzi, although there is no final reason.
“It could be the stress of pregnancy or hormonal changes during pregnancy. Patients can get an enlightening rocket or present their illness during pregnancy or within six months of pregnancy, “she said. “Sometimes the symptoms can get worse with menstrual rules because if you look at the age group, it’s usually just after starting your period and before going to menopause. We believe that there could be a hormonal influence. ”
The lupus can be genetic. There are correlations between lupus and hypothyroidism, a condition when the thyroid does not make enough thyroid hormones. Manzi said there is also a conviction that intense sun exposure can cause lupus, that drugs can trigger the disease and that stress can play an important role.
The lupus is two to three times more widespread in women of color than white women, and these cases are likely to be more serious and can cause renal failure, said Manzi.
Among the symptoms of the disease include “butterfly” rashes, pain or swelling in the joints and extreme fatigue.
“Certain rashes can be devastating and often triggered by exposure to the radiation of the sun or UV,” said Manzi. “Skin rashes can sometimes be disfiguring with scars and hair loss that can go with it.”
With lupus, there is a lot of liquid and inflammation in the body, like around the lining of the heart and lungs, which can cause chest pain.
“Often, whenever they breathe, they will have pain in their chest because of inflammation. They may have renal failure requiring dialysis. Sometimes they will present convulsions, convulsions or premature cerebral vascular accidents. And often a deep fatigue, unexplained low -grade fevers.
Treat lupus
However, there are treatments.
Anti-inflammatory steroids such as prednisone as well as anti-rheumatics modifying the disease such as hydroxychloroquine can be used for a short period, said Manzi.
There are also new therapies that are approved and certain chemotherapy, which can be used as a means of removing the immune system.
“The key is really a healthy life and a nutritious diet, take care of yourself and listen to your own body so that if something does not feel good, you are looking for care,” said Manzi.
Pittsburgh is a pioneer in the research and treatment of lupus. AHN and UPMC each have a center of excellence in lupus for treatment, and the best researchers from the University of Pittsburgh develop and test new therapies.
People travel from across the country to be treated here.
“We have a world-class autoimmunity institute and two lupus centers of excellence,” said Manzi. “We see people from all over the country who come here for diagnosis and treatment, and therefore if you are in this region, you are lucky.”
‘I was devastated’
I am at Emmerson, 28, from Penn Hills, was diagnosed at 13 years old. She was dealing with chronic fatigue, muscle pain, pain and weakness. She could walk upstairs and fall.
His initial symptoms were a rash for the butterfly face, a rash that crosses the cheeks and the nose bridge. The shape looks like butterfly wings. She received a diagnosis of systemic lupus and discoid lupus.
The continuous battles with the lupus made college with Emmerson withdraw from the college.
“Unfortunately, the stress of trying to learn and education and living a normal life really affected me, and my health started to decrease. I had to register,” said Emmerson. “I was devastated.”
Emmerson has an imported chest port and a bone filling transplant due to the bone disintegration caused by long -term use of steroids to treat lupus. She suffered a double hip and required physical therapy to learn to walk again. It is witnessing the weekly chiropractic appointments and the sauna appointments.
She has changed her lifestyle into an alkaline diet, which avoids acidic food and prioritizes food with a pH level of 7 or more to help keep the body balanced.
It is part of the National Lupus Sister Circle, a group that meets monthly to discuss the travel of the members.
“This group was a way to understand that I am never alone and that the 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 possible. This is why I worked in ambulance and emergency services. Now I just want to raise my son to the best possible man,” she said.
Macgregor said that exhaustion overwhelms it, leaving it in a constant state of fatigue. This is aggravated by frequent medical meetings – and two oral chemotherapy. She started a new treatment in April.
Macgregor always tries to understand how she got the disease. She said she had no genetic markers for lupus. It lives in an area with large amounts of pollution around the old piles of springdal smoke. Pollution can be a contributing factor.
Macgregor said she believed that a miscarriage in 2016 – and the need for three blood transfusions – may also have contributed.
Now Macgregor is looking for other opinions for processing options.
“Maybe I can at least help someone else on the road,” she said.
Offer support
Dr. Jaime Miller from Highland Park is trained in hematology and oncology. She no longer practices but volunteered with cancer patients. She received a diagnosis of lupus in 2018.
“I probably had it long before, which is a very common story that you will hear,” said Miller.
Over the past two years, she has joined the Lupus Foundation of America and has become a regional ambassador. It is also a facilitator of the Pittsburgh Lupus Support Group, the first chapter of the foundation of this type in the region.
“This group is useful not only to people with lupus, but with a connective tissue disorder,” said Miller. It is also a resource for people who wish to support others. “He offers a family.”
The group meets the fourth Monday of each month via Zoom, and he had three meetings in person at the Carnegie Liberty Library from 6:45 p.m. in March, August and October.
During the meeting in person in March, they discussed self-adversation and “Walk to End Lupus Now” in Pittsburgh in September.
Lupus drew attention to the big national titles in 2013 when the singer Selena Gomez announced that she had the disease. Manzi said that Gomez’s transparency had made aware of those who fight lupus.
“One of the interesting things about lupus is that they may not look sick,” said Manzi. Sceal, the singer, has a discoid lupus, which affects the skin and caused scars on his face.
“When people are ready to speak, it can help aware of awareness. It is about knowing if they intervene to do so,” said Manzi.
Burgetstown Katlyn Lenz-Zanis was diagnosed at 12 years old. Like Miller, she is also a regional ambassador and facilitator of the Pittsburgh Lupus support group with the Lupus Foundation of America. She co-directs the group with Miller.
The lupus runs in his family, so his diagnosis came in the months following the symptoms which included joint pain and rashes. Now 34 years old, his advocacy is fed to never want anyone to feel alone.
“Support groups also give people an outlet to evacuate,” said Lenz-Zanis, “but also a way to follow with education and knowledge.”
