Lupus survivor Mikala Tyler wants a chance at a real life

EVERY day is an internal battle for Mikala Tyler.

She was just 35 when her life changed forever with a diagnosis of systemic lupus erythematosus, lupus SLE.

For three years her immune system has fought to destroy her internal organs, skin, joints, spine and all her tissue. But lupus isn’t the only one fighting. 

Mrs Tyler, now 38, is determined to conquer the disease by any means necessary to regain her life, including controversial treatments.

“I’ve missed three years of my life so far,” she said. “I look at my children and I know I’m sick but more than that I’m sick of seeing them hurting.

“I’ve missed so much time with them I just want to be able to enjoy my children.

“I want to be a wife and mum and friend – I want to be the fun happy person I used to be.”

Mrs Tyler believes she might have found a way to make that happen – a controversial treatment where her own bone marrow is taken, bad antibodies are removed and the bone marrow is transplanted back into her body to attack the remaining bad antibodies.

She said with her body unresponsive to other treatments like chemotherapy and immune suppressants it’s her only hope. 

“The chance is there to have my life back,” she said.

“I don’t know how to put into words what the last three years of my life have been, not just how I’ve suffered but how I’ve watched my children suffer.

“I’ve not been able to be involved with them, my youngest was eight at the time and I wasn’t able to tuck her into bed.

“I used to work a ten hour shift in the timber yard prior to surgery I was so active and fit – now I’m in bed a minimum of five days a week. The other two days if I’m lucky I’ll be up for half a day or 30 minutes.”

LIVING: Mikala Tyler with husband Jeremy and their combined six children. Picture: CONTRIBUTED

LIVING: Mikala Tyler with husband Jeremy and their combined six children. Picture: CONTRIBUTED

Mrs Tyler said the journey to this point has been long and exhaustive, starting in 2012 when recovery from an annual surgery left her unable to work for six months. 

Then in May 2014 another annual surgery left her unable to stand without collapsing in a sweat. 18 months later she was diagnosed with SLE lupus. 

Years of bed rest, failed treatments and unsuccessful trials followed. 

As did a marriage and the merging of two families, but despite the joy of the union, lupus remained.

As did the fatigue and pain that plagues Mrs Tyler. 

“There’s a real lack of awareness, it’s terrible hard,” she said. “I get asked to do canteen duty or help at my children’s activities.

“I don’t think people realise how sick I actually am. It’s debilitating.

“I’m so thankful so far there’s been no major organ involvement with the antibodies but it will happen – it’s just when.”

By chance the family heard of a controversial treatment that helped other suffers regain their life.

The family is now asking for community help to travel for the treatment.

Mrs Tyler said asking for help through a gofundme page was the only way she would have a chance to go to the Gold Coast, with her husband for support, and have the treatment.

She said she has been unable to work for years and with six children between them, the ongoing cost of bills along with the treatment cost was something they can’t cover alone.

Mrs Tyler said the treatment was her only hope at regaining her life, of playing with her children without exhaustion and being able to do normal everyday activities. 

She said for more information you could access her gofundme page.