BALTIMORE — “It was really scary, I would wake up in the middle of the night with these night sweats and say to my husband, what’s wrong with me?” said Mandy Remmell, an ambassador with the Lupus Foundation of America.
Remmell spent about 5 years not knowing what was going on with her body.
“2021 is when I started to experience joint pain and hair loss. I had these hives increasing all over my body,” said Remmell.
It’s referred to as “an invisible disease.” From the time a person first notices symptoms, it takes on average 6 years to get a proper lupus diagnosis. Many of the symptoms mimic other conditions.
“Mine is all internal, so it’s invisible to other people. People will say you look great, you don't look sick but on the inside you're feeling the joint pain and swelling in the body,” said Remmell.
There’s no cure for lupus. While treatment has made significant progress over the years, the cost for medication continues to be a hurdle for some patients. Remmell is grateful that her coverage keeps bills relatively low, but she says that’s not the case for everyone.
“It’s really a battle, the insurance will deny the medicine flat out. You spend hours on the phone between the doctors office and calling the insurance companies to get medicine to help you live,” said Remmell.
Anyone can develop lupus, but there are some groups with higher risks. 90 percent of people living with lupus are women and a majority are women of color. Medical experts believe the disease is brought on by a combination of genetics, hormones and environmental factors.
“A lot of women were coming up to me, oh my cousin had lupus and passed or my sister passed from lupus. The common theme is that most of them were all older, older women of color, which made me realize medicine has come so far. Back in the day lupus was unfortunately a death sentence.”
“The most power thing you can do is changing your diet,” said Dr. Brooke Goldner, an Autoimmune Disease Specialist.
Dr. Goldner is a physician but she was also a patient. At 16 years old she was diagnosed with lupus and spent years of undergoing intense chemotherapy. In medical school, she experienced one of her worst health scares.
“Google or not, I was now a medical student and I understood the disease. So when I started getting double vision I would be walking through the halls of the hospital and the whole world would split in half, I would have to hold the wall until my vision would come together because there were blood clots going to my brain. I was more sick then most of the patients I was rounding on,” Dr. Goldner.
Her specialty is understanding how nutrition and lifestyle affects immune function.
“Most of the problems we have is coming from how we treat our body. We don't sleep, we eat poorly, and so we trigger these genes. My goal is to help people optimize their health. Listen if I only had a 5-year remission, I’d still be teaching this. But it’s been 19 years. I have 2 children and I get to grow old with my husband that I thought I’d only have for a short time.”