RALEIGH, N.C. — May is Lupus Awareness Month. The disease is a highly debilitating autoimmune disorder.
What You Need To Know
- May is Lupus Awareness Month and purple is the unofficial color of representation
- Myrah Lykes was diagnosed with lupus at age 16
- She has been coming to the Duke Lupus Clinic for 30 years
- Dr. Jennifer Rogers is the director of the clinic
Patients like Myrah Lykes can wake up hurting every day.
“I look at the positive side of it. You're still here. You still have time. And it's not going to always be like this. So I just embrace that. I have children to look forward to, to celebrate vacation with. So I just think about everything positive,” Lykes said.
One of the providers caring for Lykes at the Duke Lupus Clinic is Dr. Jennifer Rogers. She logs into their medical database to see which patients will be needing the most time during their visit.
“In our whole clinic, we usually have 30 [patients] that we see. We work as a team so we have that flexibility,” Rogers said.
Spacing out appointments can be key when treating some patients. Lykes said even on the day of a doctor’s visit, she can arrive in a lot of pain.
“To be as sick as I can be at times ... It's very good to have a physician that really can relate to you. I'm not just the number,” Lykes said.
Lykes’ symptoms can range from swelling of the kidneys to rashes and fatigue to abnormalities in her bloodwork. All of this is on top of other health issues like hereditary heart issues, gout and a kidney disease. Plus, she is legally blind and can’t drive.
“Will I be able to get out the bed? Because there are days that I can’t," Lykes said.
Lykes said she was diagnosed with lupus on her high school graduation day. The 46-year-old also said she even lost a daughter because of lupus not long after she was born because of her own health complications in 2002.
“My grandmother actually died with lupus as well. I just knew I had to fight,” Lykes said.
Purple is the color that represents Lupus Awareness Month. Lykes wears purple from head to toe.
“I’m very positive. I’m still living. I still have a heartbeat. Life is a gift,” Lykes said.
The self-described thriver created a group called Steps 2 Destiny to empower communities affected by autoimmune diseases.
"I have a motto called life gives life. I feel if I'm not feeling well, but you're feeling good and you're full of joy, your joy can give me life that I don't have that day,” Lykes said.
Part of her village of support includes her husband Jamie Lykes Sr. He drove her two hours from Charlotte to Durham to see Rogers.
“Understanding [a] patient's perspective and what symptoms they're having is really important as a physician caring for someone,” Rogers said.
The rheumatologist said the fatigue and inner body discomfort synonymous with lupus are invisible to the untrained eye.
“We often talk through a patient's treatment and make a plan together that a patient is comfortable with and understands and will take,” Rogers said.
Lykes said finding the right medications and lifestyle changes for herself is a careful dance between the patient and the provider.
So, too, is the emotional pain, which can wear on even the strongest of women.
“I have a good support team, and sometimes I don't want to be a burden."
Lykes said she feels blessed beyond measure because her two sons, Jamie Lykes Jr. and Anthony, typically check on her every day. Those sons, her husband and this Duke medical team combine to form a loving network of support to make her feel like much more than a diagnosis.
“Remember, life is a gift. Celebrate it to the fullest and enjoy the journey,” Lykes said. “Although a lot of times I may be really sick, the attitude that I have, they go with my attitude and they try to match my image. So, I mean, they have just done amazing work for me and they really see my case.”
Clarification: This article has been updated to reflect Jennifer Rogers is the director of the clinic.