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Stomp for Alports
Stomp for Alports
Story
What is Alport syndrome:
Alport syndrome is an inherited disease of the kidney, which can also effect the inner ear and eye. It is estimated to effect 1 in 5,000 Australia's and that 1 person could be me.
Symptoms of Alport syndrome:
Symptoms of alport syndrome is blood in the urine (May not be visible), protein in the urine, possible vision problem, high blood pressure and possible deafness. I suffer from the first 3 of the 5 symptoms.
How does Alport syndrome affect me?
I was born with thin basement membrane nephropathy and cataracts. From birth to the age of 16, I was visiting the royal children's hospital in Melbourne, Victoria, every six months for routine check ups.
At the age of two the cataract in my left eye unexpectedly grew. My parents immediately took me to the royal children's hospital where I underwent surgery to get it removed. Unfortunately I only see very little out of my left eye, and what I do see is a blur, so I solely rely on my right eye. My right eye also has a cataract but thankfully it hasn't grown and hopefully never will.
Unfortunately for me Alport syndrome is a under diagnosed disease. Yes, I have the symptoms but the big question is do I have it? If the answer is yes, I will live a long, happy and healthy life but if I have children they may not. This disease is more common in males so if I have a son he can have hearing difficulties, vision problems and get renal failure by the age of 40. If I have a daughter she will be a carrier like me, she still can have eye, kidney and hearing problems but will not be affected as badly as a male.
'It is every persons dream to one day become a parent but it is every parents nightmare to watch their child suffer. So please help me support this cause, so one day if I have children, they can get a result with 100% accuracy'.
I have decided to make a difference by creating my very own fundraising appeal for the Alport foundation of Australia. I will be participating in Stadium Stomp 2015 this winter and will be climbing thousands of stairs within the MCG.
I would love it if you supported my efforts by making a secure donation. I would also really appreciate it if you could share my page above or comment below so more people know about it.
Click 'Donate Now' to make a secure online donation.
Thanks so much for your support!
Amanda Vella
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Alport Foundation of Australia
Alport Syndrome is a genetic kidney disease, mostly affecting boys and young men. It leads to renal failure and also causes deafness and vision problems. The Alport Foundation of Australia is a non-profit organization with DGR status, which is dedicated to supporting families and improving the health outcomes of patients with this genetic kidney disease. Volunteer operated and with few overhead expenses, the Alport Foundation aims to raise awareness of this under-diagnosed disease. Your generous donations are directed to the funding of medical research into treatments and eventually a cure for Alport Syndrome.
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