Daniella Djan, 32, author of Crazy Became Me: A lupus story, will talk about her book and her struggle with the illness when a support group for lupus sufferers meets at Tyger Valley shopping centre this Saturday.
The Lupus Warriors Community Group was birthed from a desperate need to help those with lupus, according to Tygerberg Hospital nurse Diane Fortuin, who is part of the group.
“This autoimmune disease affects over five million people worldwide and the numbers continue to grow. Little is known about lupus, and most damning of all is that it is life-threatening, unpredictable and has no cure,” she says.
Diane says Daniella has had various physical difficulties as a result of lupus.
“She even became psychotic and was admitted to a mental hospital for months. Her book is a prime example of how lupus patients, despite the seemingly overwhelming challenges, can rise above these and achieve great things in their lives.”
Daniella says she always felt something was wrong with her, and her symptoms intensified at the age of 15.
“There is still debate whether lupus is caused by genetics, the environment or both,” says the Observatory resident. “None of my family members were remotely aware of the condition. Some even thought it was a spiritual punishment due to a ‘secret sin’ that I had possibly committed.”
Before being diagnosed, she suffered with heart palpitations, swollen and painful feet, hair loss, skin lesions, wounds that took a long time to heal, fevers, extreme fatigue, joint pain, kidney infections, swollen eyes, rashes on her fingers and poor circulation.
At 18 she was diagnosed with lupus.
“By the time I was 18, I went to my doctor at death’s door. Since he had treated me for four years, he began to wonder if it was more than just ‘being ill’.
“He subsequently referred me to a specialist who, upon looking at my medical history, diagnosed me with lupus.”
A former journalist, Daniella is a motivational speaker and teaches speech and drama at Parklands College. She started writing Crazy Became Me: A lupus story in October last year.
“The ‘crazy’ part refers to my psychosis and how I landed up in a psychiatric hospital for three months at a time because I completely ‘lost it’,” she says.
The book describes her tumultuous journey over the past 15 years.
“More importantly, it offers hope to patients and families who are faced with this beast of a disease. Despite my health challenges, I have been able to achieve success in my career. It is possible to live a full life even with this condition. My book is raw, honest and captivating. It is real; it is a debilitating, incurable disease, and it is constant.”
Daniella says lupus is not as rare as some might think – it is just hard to diagnose.
“The UK Lupus Foundation found that it takes between four to six years of continued symptoms for doctors to make a definite diagnosis. Very often, they are treating the diseases that lupus mimics and not the illness itself.
“So, sadly, many people are dying from the condition without even being aware of it. This a major problem, and lupus foundations are canvassing for awareness and to provide the proper diagnostic tools to medical personnel so that they can diagnose the condition as early as possible before there is any major organ damage.”
She encourages those with the illness to keep their minds active and positive through prayer, meditation and exercise.
“Always keep in mind daily goals that could lead to future successes. Focus on all you can do now, because the reality is that no one is promised tomorrow. This fact is even more so highlighted for the lupus patient. You’re never guaranteed a healthy day, so be sure to be fierce on capitalising on the good days.”
The Lupus Warriors Community Group will hold its last meeting of the year at the Mugg and Bean at Tyger Valley shopping centre on Saturday December 1, from 10am.
To learn more about lupus and to join the support group email Diane.Fortuin@westerncape.gov.za or firstname.lastname@example.org