“Lupus might have my body, but it does not have me,” says lupus warrior Tamryn Monique Swartz. The 25-year-old from Grabouw in the Overberg region of the Western Cape, was diagnosed in 2016.
According to the Lupus Foundation of America, Systemic Lupus Erythematosus (SLE) or lupus, is a complex and poorly understood condition. It is a chronic, autoimmune disease that causes inflammation in various parts of the body.
A life-changing diagnosis
In her matric year in 2015, Swartz decided to take a gap year to figure out what to do next. “Little did I know my life would be turned upside down.”
In March of 2016 she found out she was pregnant, and during one of her prenatal visits, one of the nurses spotted blood and protein in her urine sample.
“She asked me to come back the following day to give a urine sample again, and it had the same outcome as the previous day.”
“I was sent to the doctor’s office. I remember being very scared and nervous. The doctor booked me for a consultation at a nearby hospital, and when I got there, I was given the option to either terminate my pregnancy or visit Tygerberg Hospital to determine if they could manage the problem.”
She chose motherhood and with further investigation, it was determined that Swartz had lupus.
“I remember while the doctor was breaking the news to me, just seeing his lips move but hearing nothing come out of his mouth. The worst-case scenario played out in the back of my mind. I just nodded for yes and no, and just wanted him to leave so that I could be alone. I remember him telling me not to do Google research on the disease as pictures one will find are very scary … but I did not listen, and after seeing what was on the Internet, I felt like I was going to die – worst case scenario.”
A warrior’s gruelling journey unfolds
Swartz soon started with treatment, and although she experienced fatigue, hair loss and body aches, she says she still felt okay. She gave birth in 2016, and soon after, her lupus started to flare up.
“It was a never-ending type of pain and I was stripped of my confidence. I was insecure and no longer recognised myself when I looked in the mirror. From never taking medication, not even headache tablets, I started consuming an average of 26 tablets per day,” she says.
“I could not even take care of my baby, nor could I take care of myself. I felt helpless, and that was not something good to experience because for as long as I could remember, I never accepted help from others as I always stood on my own two feet.”
The magic of support
In 2018, Swartz joined a lupus support group which was created by a fellow lupus warrior. “I had my own people! People that had the same experiences as I had. In that same year, I finally started my studies. I felt like I had purpose again, I had something I could do for myself and for my family … something I could accomplish.
“Every day was not all sunshine and roses, but I kept pushing and with the studies came a lot of academic stress. This was not always good for my health, and I had a few minor setbacks, but rose from that too. I lost a dear friend of mine to lupus that same year, and I made a promise to fight this battle twice as hard not only for myself but for those who lost their fight against lupus.”
Swartz adds, “One thing I’ve learnt on this journey is that giving up is not an option, and no matter how hard you fall or how many times you fall, it’s about how many times you choose to get up and fight. If I had given up on my fight I wouldn’t have been able to share my story. I wouldn’t have been able to give someone else hope.”
How lupus is diagnosed
Diagnosing lupus is difficult because its signs and symptoms often mimic those of other ailments, and no two cases of lupus present the same, observes Dr Riette du Toit.
“There is no single test for lupus, and the diagnosis is usually made based on the symptoms (medical history) provided by the patient, comprehensive physical examination by the doctor, radiology and a special laboratory test that measures the autoantibodies and inflammation levels,” she says.
Du Toit is the head of the Rheumatology Division at the Tygerberg Hospital in Cape Town. She says annually, an average of 400 lupus patients are treated at the hospital.
How to live with lupus
“The management of lupus is a holistic approach by the multidisciplinary team to ensure spiritual, mental, emotional and physical wellbeing. There is no cure for lupus, but the symptoms can be controlled. Regular follow-ups by specialists for treatment is important as the treatment is aimed to reduce the inflammation and improve the quality of life of the person. Continuous research is also done worldwide to improve treatment options.”
Medical treatment will vary and is determined by the severity of the disease. Non-medical treatment for lupus includes:
- Maintaining a healthy diet and exercising.
- Getting enough rest.
- Protecting the skin when outside and ensuring that adequate sources of protection are worn when outside e.g., wearing a wide brim hat and long sleeves. Apply sunscreen at least three times a day, even on days that are cloudy.
- Adherence to doctor’s appointments so that the patient can be monitored.
- Compliance with medication.
- Developing a support system – surround yourself with friends and family who love and understand you and try to join a support group.
- Keeping a journal. This helps to record triggers, symptoms, and any points for discussion with your doctor at future appointments.
- Getting to know your body and to identify when a flare-up is imminent.
- Avoiding expectations and comparisons. Lupus is an individual disease. No two people are the same.
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