One Disease, Different Experiences: Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus (SLE), the most common form of lupus, is an autoimmune disease where the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it.
There are about 4,000 to 5,000 patients with lupus in Singapore alone. It tends to affect women of child-bearing age but is seen in men and children too*.
Four ADSG members, Ady, You Ting, Lauryn and Grace share their experiences with SLE as part of our One Disease, Different Experiences feature for Autoimmune Diseases Awareness Month.
Please describe your journey from the onset of symptoms to diagnosis.
You Ting: I started experiencing symptoms at 19. Initially, I had bleeding gums, and merely thought it was due to dental issues till the bleeding got worse. Then petechiae rashes appeared on my legs. I ignored them due to the upcoming A level exams until fever set in. I did blood tests at the GP clinic and found out that platelets were low. After that, I went to the A&E and was admitted for further investigations. At first, my diagnosis was antiphospholipid syndrome, subsequently SLE. Years later, I was diagnosed with immunodeficiency when I was 34.
Grace: I had joint pains, fever and hair loss. I went to a GP and was referred to the Rheumatology, Allergy and Immunology department at Tan Tock Seng Hospital to see the specialist.
How did you feel when you were told that you had SLE?
Ady: I felt helpless and angry because I was only twelve years old. I didn't know what to do. My face became bloated and I wasn’t able to resolve it until I was much older. Then I learned to accept my condition.
Lauryn: I felt totally down and as if my whole world turned dark, especially because the doctor said that there was no cure and we can only manage it. I locked myself in the room for an entire day. Since then I have been unable to do outdoor activities such as playing tennis and my condition has worsened from year to year.
What was the treatment for your disease like?
Ady: I was put on steroids, and I experienced moon face and weight gain. I also have cataracts.
You Ting: I was prescribed steroids and immunosuppressants. Initially, I was very tired yet I couldn’t sleep. I was unable to concentrate in school during that time. Subsequently, I had frequent infections due to immunosuppressants and suffered from immunodeficiency. I require an IVIG infusion every 2 months which was tiring at first because I would be on the drip for 8 hours, but I slowly got used to it and would need to rest for 2 days after the infusion.
Lauryn: I often experienced nausea, vomiting, hair loss and weight gain due to the medicine. I always feel tired from the frequent joint inflammation. I am unable to take long walks or do squats now.
How are you coping with your disease now?
Ady: In the past, I was not able to cope with the stress and I was always on medical leave. There was also a lack of understanding from my colleagues and management as people don't really know what an autoimmune disorder is. It is difficult to explain to others as on the outside, you look the same as a healthy person. Luckily my condition is now under control and much better than before.
You Ting: I am generally ok, but I do need a lot of rest whenever possible. I also exercise more than I did in the past.
Lauryn: It has changed my life a lot as I am unable to be as active as before. I can't walk for too long and I lose my temper more easily when I feel tired.
Grace: My disease has caused me to lose many friends as I developed an inferiority complex, especially since I didn’t know how to explain my disease to them.
What is an insight you have gained from your experience with your disease?
Ady: Listen to my body. Accept the moments when I can't do anything. Love myself. Be with myself. It is okay not to feel okay at times.
You Ting: I think it’s important to be able to sense my own body's "battery life", and always plan time for rest. I have learnt to take it easy when I am unwell.
Lauryn: Being positive is really important. Be happy and cherish every moment we still have a breath. On top of that, we must listen to the doctor’s advice and take our medicine on time.
Grace: It’s definitely important to know what my limitations are and appreciate the days when I feel “normal”.
If you could give your pre-diagnosis self some advice, what would it be?
Ady: Love yourself. You are not ugly.
You Ting: Relax and enjoy.
Lauryn: Do not ignore any symptoms shown, even in the early stages.
Grace Chin: Live life to the fullest.
What do you hope for in the future?
Ady: A healthier and happier me.
You Ting: Peace and good health for myself and my family.
Lauryn: The disease does not get worse and the condition will remain under control.
Grace: For my disease not to deteriorate.