Although aHUS is an ultra-rare disease, it touches and shapes the lives of many Australians, including patients, their families and friends, as well as the broader health community who treat the devastating disease.
For a personal insight into how aHUS affects Australians, both directly and indirectly, please watch these stories – the faces of aHUS.
“Before being diagnosed with the disease, Bianca was a very vivacious and vibrant person. She was an extremely sociable, energetic kid full of life and compassion.
My only child now has renal failure due to the time wasted by bureaucrats debating whether to provide aHUS patients with access to Soliris.”
Tammy, mother to Bianca, 17, living with aHUS, pleading for her daughter to be granted urgent access to Soliris through the LSDP
“When I’m heading to hospital following a flare, I’m wondering whether I’m going to die this time?
Death and permanent kidney damage are avoidable with Soliris.
Living with an ultra rare disease is life changing and unpredictable, because I am here now is irrelevant, without Soliris, I may not have a future, I have lost so much already.”
Tracey, 34, police officer living with aHUS rallying the Federal Government for access to Soliris
“With Soliris, Ashley has a chance at a long life. We have no certainty for Ashley in the future if Soliris is not government funded.”
Kerri, mother to Ashley, 5, who was diagnosed with aHUS at 6.5 months and is being managed with compassionate supply of Soliris
“Without access to Soliris, I worry about my kid’s future and want to ensure there is hope for their mum.
It’s unjust for patients like me, living with a life-threatening disease, to have to sit on a machine and lead such a challenging quality of life, when a proven treatment is available.”
Deborah, mother-of-two, 40, with end stage kidney disease rallying Government for access to life-saving treatment
“I’ve been on dialysis for 15 years now, which takes the place of my kidneys that the aHUS has damaged.
Should I have a kidney transplant, which Soliris would make possible, having access to the life-saving treatment would allow me to travel and live a somewhat spontaneous life.”
Kelly, 44, living with irreparable kidney damage caused by an ultra-rare, life-threatening disease
“Without Soliris, my doctor has informed me that a person can live on a dialysis machine for an average of five years.
That scares the hell out of me.”
Debbie, 52, living with end-stage renal disease caused by aHUS
“It’s critical that Australians who require Soliris are granted access to this life-saving treatment now.
These people will die if they can’t get access to Soliris and if they don’t die, they’ll be forced to live a life on plasma exchange and dialysis.”
Mother-of-four, Janet, 31, rallying Government to fund life-saving treatment for ultra-rare disease
“If my disease were to flare again, I would need immediate access to Soliris.
The treatment must be funded through the Life Saving Drugs Program (LSDP), as it will not only save lives, but provide a better quality of life and allow people living with aHUS a chance to lead a normal life.”
Lisa, 43, businesswoman and mother-of-two living with aHUS, appealing to the Government for access to Soliris
“Without Soliris Emma would not be here today – it saved her life.
She’s back to being my healthy, happy four year old girl.”
Tracey, mother of Emma, 5 whose life was saved through hospital access to life-transforming treatment
“If Soliris is not made available to those Australians who so urgently need it, they will die.”
Father of four, living with the ultra-rare, life-threatening disease, aHUS
“Soliris is the only available treatment for aHUS. It’s an amazing treatment that definitely saved my life. If people with aHUS need this treatment, they should be able to access it.”
Isabelle, 19, university student urgently seeking Government funding for life-saving treatment
“There are no alternatives to Soliris.
Letting Holly progress to end-stage renal disease is not an option for her and other Australians who require urgent access to this treatment.”
Linda, mother of Holly, 9, the little girl living in fear of her big, ultra-rare, untreated disease, aHUS
““I have a full life to look forward to now.
I am living proof of the effectiveness and life-saving capability of this amazing treatment.”
Katherine, 23, University whose life was saved by compassionate supply of Soliris