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Living with Lupus ― A patient’s perspective

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Aidwina sews quilts during her leisure time as she believes they are a way of giving blessings, comfort and love.

Lupus is a disease that occurs when your body’s immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. However, being diagnosed with this autoimmune disease does not stop Aidwina Aidan Wing from living her life.

Life becomes one big experiment

The steps on the dance floor that Aidwina Aidan Wing takes may seem like the steps of a regular dance. But the steps she has taken so far in life have not been easy. What used to scare her away from her dream as a dancer has motivated her to move forward.

Aidwina Aidan Wing. Photo credit: Jee Photography

Aidwina was 16 when she was diagnosed with Systemic Lupus Erythematosus and Lupus Nephritis in 2003. It was a dumbstruck moment for the active girl who had never heard of lupus before.

“At the beginning, I was confused as to why was this happening to me. The more I read about it, the more discouraged I felt. I thought that my dreams of becoming a ballerina and dancer would never come true. I felt like I didn’t look the part,” said the 34-year-old.

When she was first diagnosed with lupus, Aidwina experienced symptoms such as hair loss, butterfly rashes on her face, fatigue, blisters on her fingers and severe sensitivity to the sun whenever she was outdoors.

“I recalled flaring up with rashes whenever I was out in the sun and it hurt so much. So my parents brought me to do a full blood test and a skin biopsy.”

Sharing further, Aidwina added,“Being at the beach and exposed to the sun can trigger my skin rash and worsen the other lupus symptoms.

“So nowadays, I’ll make sure I wear hats, long sleeves and put on sunblock. I also minimise my time outdoors when it is sunny.”

Since lupus affects the muscles, joints and tendons, she needs to do some stretching exercises and light workouts. However, if she moves too much, her body will stiffen.

Aidwina (right) at 16 when she had the worse flares due to lupus.

“If I don’t move at all, my body will also stiffen. But over time, I have learned to manage it.”
Other than that, Aidwina has to forget about outdoor activities when it is sunny outside. “I have to say no and take a break before I start to flare. I also experience the ‘but you don’t look sick’ stigma,” said the dancer.

Nonetheless, she has learnt to be optimistic despite the diagnosis. Having read the late author Sara Frankl’s blog, Aidwina shared a phrase from her writings that has changed her life as she continues to find joy in each day — “I see every moment of my life now, both the difficult and the joyful, as moments to be embraced. Because I know that God is in the middle of all of them. He is in the centre of my storms and my blessings. He sees it all with eyes that know and understand and foresee the purpose of my situation. And I want what He wants.”
The administrative officer is grateful to her parents, her late husband and close friends who continue to support her dreams.

“They constantly instil in me that I can be whoever I want to be even if I have to modify it. I may not be the ballerina that I thought I would be but lupus opens up my mind towards other things.”

Despite the hardships, Aidwina has learnt to take breaks from dancing when the pain of her disease is too much to handle.

“I have learnt about the importance of self-care and mental health. I’ve also learnt to be patient with recovering and managing pain. I’ve learnt to compromise and say no when my body can’t take it.”

“Living with lupus is like a big experiment. Days are uncertain and finding a good routine is different for every lupus patient,” she added.

A life-changing disease

Nephrologist Dr William Luong Chau said more than 10,000 people had been diagnosed with lupus over the past 30 years in Malaysia.

“However, this number may be only the tip of the iceberg. There are many more lupus sufferers in Malaysia who have not been diagnosed.”

Meanwhile, about 90 percent of lupus patients are women while 10 percent are men and children. “About 90 percent of women with lupus are in their childbearing years, between 15 and 50 years old.

Twenty percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus. About five percent of the children born to individuals with lupus will develop the illness.”

Sharing further on the disease, Dr Luong said it occurred when the body’s immune system attacked the tissues and organs (autoimmune disease).

“Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.”

According to the doctor, there are two types of lupus diagnoses. One is ‘Cutaneous or Discoid Lupus’ which affects only the skin and is the least severe form of the disease.

Another type of diagnosis is Aidwina’s Systemic Lupus which affects at least one major organ in the body.

“It is serious and deadly if left untreated,” said Dr Luong.But what causes lupus? Dr Luong said that the cause remained unknown. However, it could be a result of the combination of genetics and the environment.

“It appears that people with an inherited predisposition for lupus may develop the disease when they come into contact with something in the environment that can trigger lupus.”

Some potential triggers include:

  • Sunlight — Exposure to the sun may bring on lupus skin lesions or trigger an internal response in susceptible people.
  • Infections — Having an infection can initiate lupus or cause a relapse in some people.
  • Medications — Lupus can be triggered by certain types of blood pressure medications, anti-seizure medications and antibiotics. People who have drug-induced lupus usually get better when they stop taking the medication. Rarely, symptoms may persist even after the drug is stopped.

More on Lupus

What are the symptoms?

Lupus is called the “The Great Imitator” because its signs and symptoms often mimic those of other conditions such as fibromyalgia and diabetes. The most classic sign of lupus — a facial rash that resembles the wings of a butterfly across both cheeks — occurs in many but not all cases of lupus. The most common signs and symptoms include:

  • Fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion and memory loss

How does it affect a person in the long run?

Long term complications of lupus include the followings:

  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus.
  • Brain and central nervous system. You may experience headaches, dizziness, behaviour changes, vision problems, memory problems and even strokes or seizures.
  • Blood and blood vessels. Lupus may lead to anaemia, and increased risk of bleeding because of problem with blood clotting.
  • Lungs. It can cause an inflammation of the chest cavity lining, which can make breathing painful. Bleeding into lungs and pneumonia also are possible.
  • Heart. Lupus causes inflammation of heart muscle, arteries or heart membrane. The risk of cardiovascular disease and heart attacks increases greatly as well.
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments can weaken the immune system.
  • Cancer. It can increase your risk of cancer because of the treatment with immunosuppressive drugs. However, the risk is small.
  • Pregnancy complications. Women with lupus have an increased risk of miscarriage. Lupus increases the risk of high blood pressure during pregnancy and preterm birth. And lupus may flare up during pregnancy.

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