Working Together This World Lupus Day

Lani Redward-Taulapapa knows the frustration of trying to explain her condition to others, most of whom have never heard the word LUPUS.

Lani is promoting World Lupus Day’s (10 May 2011) by working together with Arthritis New Zealand to create awareness of a form of arthritis that affects at least five million people worldwide, 90% of whom are female.

In New Zealand lupus is 3 – 4 times more common amongst New Zealand Māori and Pasifika peoples.

Lani knows only too well the impact lupus can have on a person’s life; she was diagnosed with the condition at just 16 years of age.

Lani first realised something was wrong after her rugby practice, when her legs painfully swelled and she found lesions on her body.

Her GP was unsure of Lani’s condition and referred her onto a skin specialist, who then referred Lani on to a Rheumatologist who ran blood tests and confirmed that she had lupus.

Lani began to suffer from a rash on her cheeks and the bridge of the nose (called a 'butterfly rash') and her arthritis flared.

At 17, Lani had to have chemotherapy as the lupus was affecting her kidneys.

Now 21, Lani’s renal failure is in remission and she manages her symptoms by taking twelve pills a day and making sure she gets plenty of rest.

Lani said: “I feel good at the moment; it’s like it comes and goes when it wants to. From stress to cold, whenever it wants to appear it just pops up and annoys me.”

An interesting twist to Lani’s journey with lupus, is that both her grandmother and her grandmother’s sister have been diagnosed with lupus although due to Lani’s mother being adopted, they are not blood relations of Lani’s.

Lani is a very positive and generous person, she recently volunteered at Arthritis New Zealand’s Children’s Camp held in Matamata in March.

Rob Mitchell, Acting Chief Executive of Arthritis New Zealand, hopes that World Lupus Day will increase awareness of the condition: “Because lupus can mimic many other conditions and the first symptoms of lupus are very vague (it is often described as like having the flu all the time), it’s a hard condition to diagnose.”

“Make no mistake, like other forms of arthritis, lupus is a cruel and debilitating auto-immune disease. It’s capable of damaging virtually any part of the body, including the skin, joints, heart, lungs, kidneys, and brain.” “By Lani and Arthritis New Zealand coming together to support World Lupus Day, we hope to increase awareness of the issues those with lupus face every day, and call for increased financial support for arthritis research, awareness and patient services.”

ENDS

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