How Janine Leghissa’s business empire is a sparkling success despite living with lupus

Starting her business out of necessity as a financially strapped, single mother of three seven years ago, Thirroul’s Janine Leghissa has today built three successful businesses despite a daily battle with lupus.

Janine started multiple award-winning boho jewellery business Desiderate in 2017, which has a growing Australian team, alongside teams in India, Thailand and Indonesia.

This month her work with Desiderate led to her being named as one of Inside Retail’s Top 50 People in Ecommerce. Other achievements include being named an AusPost 2023 Local Business Hero and being awarded the 2023 Gold Stevie International Women in Business Awards – Achievement in Customer Satisfaction honour.

Last year she added to her business portfolio with all-natural fabric boho clothing business Taleeta and three months ago started unique leather goods business Charzek.

However, the journey hasn’t been an easy one, after discovering she had systemic lupus erythematosus (SLE) after a motorbike ride with friends one day.

“I woke up one morning and I could barely see – it was like I had gauze wrapped all around my eyes,” Janine said.

“We were out riding and I said, ‘Look, I’ve got to get back home. It’s really dangerous to be riding. The visibility is terrible. The fog is terrible’.

“They all looked at me like I was crazy, because there wasn’t any fog.”

Tests revealed she had lupus SLE, a systemic type of lupus which went through the whole system targeting organs.

“So rather than fight bacteria or diseases, what lupus SLE does is it affects your organs and tries to close your organs down,” she said.

For Janine, it has led to hair loss, tumours in her spine, kidney problems and doctors telling her she would never walk again.

It was one of the reasons for starting Desiderate, along with being a single mother.

“I started because I was broke,” she said.

“I ended up losing my home, being diagnosed with lupus and being really sick and basically homeless and broke.

“I started selling my own belongings on Facebook, which was fairly new to me back then.”

It sparked something in Janine, who realised you could sell things online, prompting her to learn to build a website.

“At that stage, I would basically get one piece made, sell it and use half the money to buy some groceries and the other half would buy another couple of pieces,” she said.

Janine learned about digital marketing and SEO, along with how to design jewellery and have it made so that it wasn’t cheap costume jewellery, but jewellery store quality without the same price tag.

“I discovered that there was a market out there for women who wanted that individual style and things that were quite striking and bold and unusual,” she said.

“Originally, my pieces weren’t as good a quality because I didn’t have the money – I just did the best I could.”

Janine leaned on her skills from previously being an award-winning artist and having a career with international hairdressing companies specialising in colour and design.

She “harassed” people to help source real gemstones and commissioned jewellers to produce pieces to her specifications in India, Thailand and Indonesia.

“Before, I’d have to be chasing people but now I say, ‘I’m looking for this, can you help me find parcels of it?’ and the lapidarists come back to me with different parcels they’ve discovered,” she said.

“Our pearls come from the islands off the back of Lombok and that’s really nice because it’s a small pearl farming village and so our pearls support the whole village.”

Janine has visited many of the places her jewellery is sourced from or made in.

“To me, it’s really important that everything’s ethical,” she said.

“I like to know where and how our pieces are made and to see that the teams of craftsmen making them are happy and being treated fairly.”

Her new businesses have been able to further support those communities, with the production manager for Taleeta based in Bali and Charzek supporting leather craftsmen she’s got to know in Indonesia.

It’s the teams in Wollongong, Indonesia, India, Bali and remote staff, which includes her son as project manager in Canada and daughter who also has lupus, that allows Janine to keep the businesses moving forward on her toughest of days.

“The last couple of months have been really difficult,” she said.

“I’ve had some serious issues with my spine, and it’s meant for quite a few months I’ve been in really bad pain.”

However, her attitude to running businesses with lupus was “you just do what you have to do”.

“In the beginning I would work from bed basically with a bucket and a laptop,” she said of the medications making her feel sick.

She said everything now had a system or procedure behind it so it could function without her.

Janine donates a portion of profits to Lupus New South Wales, now a national body, which supported her when she was first diagnosed.

“I was in a really bad way,” she said.

“By the time that things were bad enough to be diagnosed, the body was really caving.

“They were really helpful with practical things that make your life much easier and that make living with lupus more manageable.

“The more money that’s raised for research, the more research is done.”

Learn more about Desiderate and Taleeta.