Lupus ‘warrior’ gives hope to those affected by this chronic, autoimmune disease

‘Lupus might have my body, but it does not have me.’ These are the encouraging words of 25-year-old Tamryn Monique Swartz, a Human Resource Management student from Grabouw. Tamryn, who was diagnosed with lupus at Tygerberg Hospital in 2016, describes herself as a daughter, sister, friend, mother, and full-time lupus warrior. 

Systemic Lupus Erythematosus (SLE), lupus in short, is a complex and often poorly understood condition. It is a chronic, autoimmune disease that causes inflammation in various parts of the body. Globally, World Lupus Day is celebrated on May 10, and is used to raise awareness and educate the public about the symptoms and health effects of lupus. Purple is the official colour of Lupus, so members of the public are encouraged to wear purple or a purple ribbon. 
 

Inflammation caused by lupus can affect almost any part of the body systems including the skin, joints, blood vessels, heart, kidney, brain, and lungs. Normally, the immune system helps protects the body against infection but with lupus, the immune system produces autoantibodies and attacks the healthy cells and tissue. 
 

Men, women, and children, irrespective of their race or ethnicity, can develop Lupus, but it is more common in women between 15 and 45 years of age. There are four different types of Lupus namely Cutaneous Lupus Erythematosus, Drug-induced Lupus Erythematosus, Neonatal Lupus and the most common type, SLE. Western Cape Government Health and Wellness (WCGHW) continues to render high quality patient care to Lupus patients in the province, and increased research initiatives into the causes of and cure for lupus. This contributes to earlier diagnosis and treatment of lupus, and ultimately better epidemiological data on lupus globally.

Tamryn shared: ‘After matriculating in 2015, I decided to take a “gap year” to figure out what it is that I wanted to do next. Little did I know my life would be turned upside down.’ In March of 2016, Tamryn 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 outcomes 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 consult 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.’ Tamryn chose the latter, and with further investigation, it was discovered that Tamryn had SLE (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, playing off the worst-case scenario in the back of my mind. I just nodded for yes and no, and just wanted him to leave so that I can be alone. I remember him telling me not to go to Google to do 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.”

Tamryn soon started with treatment, and although she experienced fatigue, hair loss and body ache, she still felt okay. In August 2016, Tamryn gave birth, and not long after experienced her first lupus flare up.  ‘I literally stood face to face with death. At that point I was even ready to go; I just wanted the pain to be still. It was a never-ending type of pain, I was stripped of my confidence, I was insecure, I no longer recognised myself when I look in the mirror. I went from being someone that never took medication, not even headache tablets, to consuming an average of 26 tablets per day. 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.’ 

Because lupus can affect so many different organs, a wide range of symptoms can occur. Everyone reacts and present differently. Symptoms can range from mild to severe. The most common symptoms of lupus are extreme fatigue, headaches, fever, painful swollen joints, anaemia, swelling in hands, feet or around eyes, butterfly shaped rash across the cheeks and nose, hair loss, abnormal blood clotting mouth and nose ulcers.

Diagnosing lupus is difficult because its signs and symptoms often mimic those of other ailments, and no two cases of lupus present the same. 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, and radiology and a special laboratory test that measure the autoantibodies and inflammation levels. 
 

Annually, an average of 400 lupus patients are treated at the Tygerberg Hospital. Dr Riette du Toit, Head of the Rheumatology Division at the hospital, said: ‘The management of lupus is a holistic approach by the multidisciplinary team to ensure spiritual, mental, emotional and physical well-being. 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 consists of the following:

• 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 is coming.
• Avoiding expectations and comparisons. Lupus is an individual disease. No two people are the same.

In 2018, Tamryn joined a lupus support group which was created by a fellow lupus warrior. ‘I joined and I finally felt at home – 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.’

WCGHW encourages those infected and affected by Lupus to become knowledgeable about the disease. Reputable information and resources can be found on the following sites: 

• Arthritis Foundation: https://www.arthritis.org.za
• Andreas Gift Foundation: http://andreasgiftfoundation.org.za
• Lupus Foundation of America: https://www.lupus.org

Tamryn concluded by sharing: ‘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.’