1 in 460 Indigenous people in the Northern Territory have Crusted Scabies

Crusted Scabies
Crusted Scabies
Crusted Scabies

Crusted Scabies is a highly contagious and chronic form of the skin disease, scabies. People with Crusted Scabies become engulfed with millions of scabies mites because their body is unable to launch an immune response to control mite replication. They often suffer in silence with pain and disfigurement (crusting and rotting flesh) similar to the social stigma of leprosy. If left untreated these individuals have a 50% mortality rate over 5 years.

Crusted Scabies patients are core transmitters of scabies spreading it to others in their household and community. Elimination of Crusted Scabies is the crucial first step to addressing scabies which is endemic in remote Indigenous communities. 7 in 10 Indigenous children suffer from scabies at least once before their first birthday.

For more information on Crusted Scabies please see our clinical resources.

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Personal Stories

 
 
 

Adam's story

Adam's story

In December 2010 I began working for Kentish Lifelong Learning and Care, a family day care scheme that runs a program called Absolutely Top Care. It is through Absolutely Top Care that my family (which at that time consisted of myself, my wife and her two children) grew by 3 more – a 6 year old boy, 4 year old girl and 2 year old boy. These children came to us in need of a safe home as they displayed some behavioural and medical issues. One such issue was scabies, which we were informed by the Department of Children and Families (DCF) that the children had suffered from in the past and that it was treated. I knew little about scabies at that time and when the children arrived their skin looked clean and healthy. 

Four years passed and within those years there was a lot of change, but one thing that was a constant presence was scabies. A week after the children joined us I noticed the oldest of the children had a crusty white build up on his scalp. Concerned that it was scabies I took him to the local clinic for Indigenous children. The doctor diagnosed Tinea Capitis, we were given some medicated shampoo and away we went relieved it wasn’t scabies. However, after using the medicated shampoo for several weeks there was no change to the white crust, and we noticed that the other children in the house had developed tiny itchy lumps. While it was quite obvious that we were facing a case of simple scabies, suspicion was growing about this persistent crust. So it was time to do our own research. My wife visited Doctor Google and it didn’t take long to find that the white crust we were seeing was very similar to what Doctor Google described as crusted or Norwegian scabies. She also discovered that crusted scabies is sometimes misdiagnosed as a fungal infection. While not wanting to make diagnoses from Google we returned this time to see a Paediatrician. It was confirmed that the children had simple scabies, but the white crust needed more investigation. For the next three and a half years we battled scabies with creams and lotions, but it just wouldn’t clear up completely. Everyone in the house was infected. Visitors would come and go; we had no choice but to warn them not to hug the children as you might end up with scabies.

"Everyone in the house was infected. Visitors would come and go; we had no choice but to warn them not to hug the children as you might end up with scabies."

Despite all our efforts, and at times thinking we had got on top it, the scabies would always return. The white crust would spread from the scalp to the ears and eyebrows, to between fingers and around genitals. You can only imagine how this would affect a young boy. At the beginning of this year we had an appointment to see a dermatologist. Again it was confirmed as scabies and a fungal infection, but this was the first time a course of ivermectin was prescribed. We left that appointment with a sense of hope and optimism that finally we will get rid of this once and for all. However it didn’t go away. Over the years we managed the scabies with creams and lotions, and sometimes medications but we just could not break the curse of this horrible little mite. I lost faith that anything was going to stop this bug and resigned myself to the fact that we will just have to live with it and manage it as best we can.

Around July this year, I got a call from a nurse called Leonie, from an organisation called One Disease. I had never heard of One Disease before this. Leonie explained that she was made aware of the child’s case and noticed that there were some issues with the prescribed treatment. I must admit I was apprehensive about her visit, as I was convinced that I would be told again that the children have scabies and get told to keep doing what we were doing. However, Leonie took one look at the oldest child (now 10) and without hesitation said “he has crusted scabies and needs to be hospitalised.” With surprise and a sense of overwhelming relief I said “what…. really…. when? Now?” Leonie checked the other children and suggested that the three siblings should all be hospitalised. Three and a half years on, after visiting Doctor Google and many other doctors in-between, finally some real action was being taken thanks to Leonie and One Disease. The younger two of the siblings spent 5 days in an isolated room being thoroughly treated for simple scabies, while the oldest child was comprehensively treated for crusted scabies for almost two weeks. Meanwhile I was able to treat everyone at home and treat the home itself, something I hadn’t been able to do before the children were in hospital. I took all of the children’s clothes and bedding and hung them in the sun to kill those nasty mites. For a while our back yard looked like a Chinese laundry.

It has been 6 months since the children were treated in hospital and we have not seen any white crusts since. Without the intervention of Leonie and One Disease, our family would still be itching and scratching, fighting this mite. But now, thanks to Leonie and One Disease, I don’t have to warn friends and family not to hug the children. And thanks to Leonie and One Disease I can give the children a hug goodnight, safe in the knowledge that scabies has gone, and so too, has the risk of serious long term health issues.

Stephen's story

Robert's story

Robert's story

So what’s the best part about not having crusted scabies, Robert? “My brothers are glad I don’t wake them at night anymore!”

“I had this for a long time, as long as I can remember... I was itchy all the time,” says Robert. Despite this, he was only recently able to put a name to the condition he had - crusted scabies. 37-year-old Robert Munkara was recently admitted to hospital for a heart attack. Although the circumstances were unfortunate, this heart attack turned out to be a blessing in disguise for Robert. It was here at Darwin hospital that he was finally directed toward Jenny Jenkins, a One Disease nurse.

“I used to go to clinic and get cream, but it wouldn’t go away. The cream didn’t work.” Robert lived a very private life spending much of his time at home, covered up, because he didn’t want people to look at him. His two brothers who lived with him also suffered along with Robert as he was up most nights, itching and in pain. When Jenny was put in contact with Robert, she knew exactly what the problem was and how to deal with it. "I remember her face from Wurraminyanga. She’s from the Skin Mob, she make us understand about scabie bug,” says Robert. Jenny was a regular visitor to the community where she conducted skin screenings for simple scabies and liaised with the local clinic in search of crusted scabies patients. 

Often these crusted scabies patients are isolated and hidden away in homes as they are embarrassed to go out. Sometimes, even locals don’t know whether these individuals live there, which makes it harder to find and treat them. 

“I didn’t know I had crusted scabies… Jenny showed me pictures which helped me learn”. Jenny was one of the few regular visitors Robert had during his time at the hospital. Once he had recovered from his heart attack, she suggested he remain in hospital for two additional weeks so they could treat his crusted scabies. “I didn’t want to stay but Jenny said that it would go away and wouldn’t itch. She helped me get clothes, and books so I wasn’t bored”. Robert was pleased to see that within a week he was beginning to see his skin looking clearer. After one week, the itching had eased and he even managed to get a full night’s sleep - something he hadn’t had for many years. Now, Robert is back in the community and enjoys going out and about, proudly showing off his shiny, healthy skin.  Jenny still visits Robert to make sure he continues to use his creams and looks after himself and has informed the local clinic to ensure Robert has his check-ups. So what’s the best part about not having crusted scabies?  “My brothers are glad I don’t wake them at night anymore!” laughs Robert.

Wapit's story