Pelangi is based on the true story of an SLE patient. The novel tells the story of a little girl, Sarah, and her new friend, Farra, who has just moved into the neighbourhood. They soon become good friends. However, Farra develops a mysterious illness, which is finally diagnosed as Systemic Lupus Erythematosus (SLE). Sarah does not want to lose her friend and is always with Farra even when she is sick.

Through Pelangi, her diary, Sarah tells of her feelings and experiences as she sees Farra suffering from the illness. Because she cherishes their friendship, Sarah is willing to follow Farra — even if she has to move away from the neighbourhood, even if it means she will be away from her own family, as long as she is with her friend. Sarah truly admires Farra for her strength and perseverance in fighting the illness and to continue living. It is a story of hope for Lupus patients, especially children with Lupus.

Persatuan SLE Malaysia (PSLEM) has chosen the theme, “The Child with Lupus”, for World Lupus Day 2009 next month to raise awareness of the challenges faced by children suffering from lupus as well as the difficulties faced by their parents, caregivers, medical professionals and friends.

PSLEM Vice President and Consultant Rheumatologist Dr Yeap Swan Sim explained that while lupus is generally known as a condition that affects young women of child-bearing age, lupus can also affect children as well. Lupus often goes unrecognised because its primary symptoms – joint pain, fatigue, skin rashes, and fever – mimic many common illnesses, which can cause people and children to receive treatment for conditions they may not have.

“Diagnosing an adult with lupus is difficult, but diagnosing a child is even more so as they often do not know how to describe their symptoms. Caring for a child with lupus also places tremendous stress on any family,” Dr Yeap added. “After the diagnosis, the first step for every parent is to understand as much as possible about juvenile lupus and the special needs of a child with the disease.

“Presently, there is no known cure for lupus. The medications used to control lupus depend on the severity of the disease and these medications have side effects that could affect the child physically, emotionally and psychologically,” she explained. “Thus parents face the challenge of educating the people who the child will be relating to almost daily – siblings, other family members, school teachers, classmates – so that they will be sensitive to the needs of the child with lupus.”

World Lupus Day 2009 Organising Committee Member Ms Chee Siew Lian emphasised that this year’s focus on young lupus patients was in response to the increasing number of parents of children with lupus who have sought out the association’s help and support network.

“We would like to get more parents aware of the signs and symptoms of this disease so that they are aware of it and will seek medical attention for their child early. With proper treatment, the prognosis for children with lupus is good – in fact, among our association’s Committee Members are patients who have battled lupus since they were eight, nine, 12 years old, ” Ms Chee said.

“The message we wish to convey to parents of children with lupus is that there is hope and a future for their children, especially if the disease is detected early and the treatment regime is closely followed. We have seen that parents and children cope better in living with lupus if they are in a support group and this is where PSLEM can help by connecting them to counsellors and survivors,” she added.