‘Lupus has stolen many things from my daughter – but not her beautiful spirit’

KATIE is in severe pain.

The joints in her body swell, she suffers from headaches, fevers, light sensitivity, hair loss, mouth ulcers, and shivers – even in the summer months.

You would be forgiven for assuming Katie is elderly, but she’s just seventeen years old.

Katie Sloane has lupus – an incurable disease affecting millions.

Today – on World Lupus Day – we spoke to Katie’s mom Zoe about the difficulties her brave, bright, beautiful young daughter faces on a daily basis.

‘Katie was extremely sick for three long years before she was diagnosed with lupus by a rheumatologist last year,’ says Zoe.

She and her husband Kenny, both of Empangeni, as well as Katie’s sister Demi, spent countless hours travelling to a fro between doctors while trying to determine what was making their child tired, emotional, weak and battling with crippling pain.

‘Lupus is very difficult to diagnose. Katie struggles every day, but she is a very strong young lady who fights her best fight every single day.’

Zoe says lupus has stolen many things from her daughter – her extra curricular sport and hobbies, her entire social life, and special events that she looks forward to attending, but has to cancel at the last minute.

‘But lupus has not stolen her beautiful spirit, or her incredible courage.

‘As a family we are extremely proud of her and how strong she can be.’

Understandably, Katie misses large chunks of the school term at Grantleigh owing to the disease, which Zoe says puts extra pressure on her.

‘Katie will pick up the smallest cold or infection and will be sick for weeks.’

Her friends at Grantleigh, though, have been incredibly supportive and held a lupus awareness ribbon event at the school, which saw Katie’s peers proudly parading their purple ribbons in honour of the brave fight that she deals with on a daily basis.

‘It is not easy seeing your daughter being so sick and there is absolutely nothing you can do except be there for her.

‘We want to thank our family and special friends for always being there for our family,’ said Zoe.

About lupus

Lupus is a chronic auto-immune disease that can damage any part of the body – skin, joints, and/or organs.

It is difficult to diagnose, a challenge to treat, and there is no cure.

Sixty-five percent of lupus patients list chronic pain as the most difficult aspect of living with the disease.

The most common symptoms of lupus

Extreme fatigue (tiredness)

Headaches

Painful or swollen joints

Fever

Anaemia (low numbers of red blood cells or haemoglobin, or low total blood volume)

Swelling (edema) in feet, legs, hands and/or around the eyes

Pain in chest on deep breathing (pleurisy)

Butterfly-shaped rash across cheeks and nose

Sun or light sensitivity (photosensitivity)

Hair loss

Abnormal blood clotting

Fingers turning white and/or blue when cold (Raynaud’s phenomenon)

Mouth or nose ulcers

How common is lupus and who does it affect?

The Lupus Foundation of America estimates that at least five million people worldwide have a form of lupus.

Lupus strikes mostly women of childbearing age – however, men, children and teenagers develop lupus too.

Apart from the listed symptoms, many suffer from cardiovascular disease, strokes, disfiguring rashes and painful joints.

For others, there may be no visible symptoms.

Types of lupus

Systemic lupus accounts for approximately 70% of all cases.

In approximately half of these cases, a major organ or tissue in the body, such as the heart, lungs, kidneys or brain will be affected.

Cutaneous lupus (affecting only the skin) accounts for approximately 10% of cases.

Drug induced lupus accounts for about 10% of all lupus cases and is caused by high doses of certain medications.

The symptoms of drug induced lupus are similar to systemic lupus, however symptoms usually subside when the medications are discontinued.

Neonatal lupus is a rare condition in which the mother’s antibodies affect the foetus.

At birth, the baby may have a skin rash, liver problems or low blood cell counts, but these symptoms typically disappear completely after six months with no lasting effects.

WATCH THIS VIDEO: Living With Lupus

How can you be more considerate to people with lupus?

Credit: Lupus UK

Helpful links
Lupus Foundation SA – www.lupusfoundation.co.za
Lupus South Africa – www.lupussa.co.za
Lupus Research Alliance – www.lupusresearch.org