My journey with an autoimmune disease called Scleroderma, a lupus-related disease.
Foreword May is Global Lupus Awareness Month, highlighting this lifelong illness. While lupus brings challenges, many live long, healthy lives by managing and preventing symptoms. At Zarcare, we value the power of sharing experiences and are honoured to present Sunette Leite’s inspiring story as she navigates lupus-related conditions. Please note that these personal stories reflect individual experiences and are for informational purposes only. Zarcare does not hold similar views or offer medical advice. Consult a healthcare professional if any of the information below raises concerns about your health. Sunette’s Story Just imagine being told at a very young age that your health is in such a bad state. That there is no cure and very little information or research for the type of disease you have. Just imagine being told that your disease is so rare you are the first recorded child to be showing such severe symptoms. Imagine hearing your doctor say that you most likely won’t live to see another birthday. I was only nine years old, trying to process all of this information and understand why my mother was so upset and confused, hurt and not able to properly explain to me what was going to happen to me. All of this took place during the early 1990s after going to see my general practitioner (GP) and being referred to so many doctors to try and understand why I was so ill and where these rash-like patches on my cheeks were coming from. Why are my joints hurting? Why does my skin feel tight and rough and rugged as leather? Eventually, the doctor referred me to Tygerberg Hospital’s dermatology division, where doctors treated Lupus patients. Dr. Marinda Du Toit attended to me and performed various tests to determine a proper diagnosis. My final diagnosis was Scleroderma, also known as systemic sclerosis. Scleroderma is a rare disease mainly found in people aged 30 – 50. Scleroderma is one of many illnesses related to Lupus. Both are inflammatory autoimmune diseases that attack multiple organs and, in some cases, both diseases can happen at the same time. Around 20% of people who have Scleroderma also have Lupus as a cross-over condition, which can overlap. [1] I was only nine years old; why me? This would be one of the questions that would go through my mind. I tested positive for the following symptoms: My skin felt so tight and sensitive that it eventually became difficult to live a proper daily life. I could not move around too much without being in pain. Holding a pen to write was painful as my fingers could not straighten out. I could not wash, dress or feed myself. My diet had to change drastically. Soft foods and no red meat, as I could not swallow whole foods. My oesophagus narrowed, and indigestion was my daily struggle. Playing outside with my friends was something I could not do, as I could not be in the sun without a hat and sunscreen and, worst of all, fearing my friends would laugh and make fun of me, as my joints were visibly sore and stiff. I could not move around freely; any form of expression was never a happy moment. I felt confused and upset. Depression and psychotherapy played a huge role in ensuring my mental health was not declining at all. Most of my days would be spent at Tygerberg Hospital attending treatment straight after school, and they would not admit me as a patient, as I was still attending school, and my mother wanted me to still have a sense of a “normal” childhood with family. I had to attend treatment sessions three days a week, which included physiotherapy and phototherapy combined with PUVA therapy. This is a powdered form of medication containing Psoralens diluted in a bath of water for me to soak in and then expose my skin to UVA (long wave ultraviolet radiation), which softens the skin from being tight and taunt. This was a main feature of my treatment as it had never been tried before. Tygerberg Hospital at the time was the only hospital with doctors offering treatment and therapy to children with lupus. I was the first child in South Africa at the time to have displayed such severe symptoms which they noted as Juvenile Lupus. Some medications tried did not yield any results and left me with a Stephan Johnson reaction (a rash that spreads into blisters) to my skin, mainly my face. Due to that, I am now allergic to Naproxen and Penicillamine. I was a guinea pig for so many trials and treatments, being pricked and having to endure so much pain and side effects. All this was recorded and used for research with Dr Marinda Du Toit. In my late teens, I seemed to have responded so well to medication and treatment. Tests confirmed that I had gone into remission. There were no signs of symptoms or any new developments in my health. I lived like that for many years. By the time I had gotten married and had my first child, there was a fear that I would have another flare-up, and my pregnancy became high risk. I had this fear that I would pass on this nasty disease to my child, but I am thankful that this disease is not hereditary at all. My baby girl was healthy, and so was my second pregnancy. I lived a healthy lifestyle, tending to my children, eating healthy and exercising. In 2016, I had a flare-up that affected my kidneys, and I was admitted to Cape Gate Medi Clinic for treatment and further tests. At first, the doctor thought that it was a UTI (Urinary Tract Infection) that had spread up to my kidneys, but additional tests and scans showed that it was inflammation of the kidney. This is something I had never experienced before. I had to stay in the hospital for 6 days for treatment and monitoring. Antibiotics and pain medication were administered via a drip. I soon noticed through life that stress and depression play a considerable role in how it can affect any form of Lupus. I went through various stages of life which would bring on the onset of stress, worry, and depression, only to realise in 2018 that I am going through another Lupus flare-up, but this time, it mainly showed up in the form of Rheumatoid Arthritis (a chronic inflammatory disorder that can affect more than just your joints). Fatigue affected me this time around. My joints hurt so much that I could not do much around the house, cook, etc. My Rheumatologist (Dr Halland) prescribed treatment for this flare-up (Methotrexate), which could be described as an autoimmune form of treatment but also used in cancer patients. I had terrible side effects, which included severe hair loss and face swelling, and it would leave me in bed for three days. Once again, it would just take me back to that little 9-year-old girl who felt like the world was ending and that my body would give up on me at any moment. Dr Halland [4] is based at Panorama Hospital and works as a Rheumatologist. References: [1] – https://my.clevelandclinic.org/health/diseases/scleroderma [2] – https://www.webmd.com/arthritis/raynauds-phenomenon [3] – Zola Brunner (Admin) +27 63 141 1842 Lupus support group via WhatsApp [4] – https://www.mediclinic.co.za/en/corporate/doctors/2/dr-anne-halland.html
I quickly realised how lucky I am to have supportive family and friends. My Doctor at the time was also very supportive and impressed by how I handled all of this. I had to learn how to take charge of my life from a young age and make each day count, not letting this disease get me down at all. I have a loving wife and two beautiful young daughters who need me and who cheer me on every step of the way. I take my mental health very seriously and always try to rest and take time for myself, as it’s crucial not to feel any stress or get involved in any stressful situations which could contribute to the start of a flare-up.
Today, I am free of medication and once again in remission. I have not had a flare-up since 2021. Blood tests are clear, and there are no signs of any of my organs failing or my skin being taunt and tight. However, I am always mindful of sticking to a healthy lifestyle and routine to maintain good health and not take any of it for granted. I listen to my body, incorporate many healthy methods, and continue to research this disease. Treatments and awareness have progressed as the years have passed by. There are many support groups now for lupus and related illnesses worldwide. I am part of a Lupus support group via WhatsApp[3]; we are a group of ladies that share tips and tricks, health information, and details from doctors or specialists for those wanting more information, second opinions, etc. But the most crucial part is that we support and encourage each other, and you never feel alone.
Notes:
Dr Marinda Du Toit, residing in Australia, is no longer practicing in this field.