Preventative glaucoma research gives Phoebe hope

My name is Phoebe Young and I am a QEI Foundation Ambassador. You may recall my story, when at aged 18 I suffered an allergic reaction called Stevens-Johnson Syndrome which caused my eyes to burn and blister leaving them scarred and with poor vision.

With Christmas approaching, the QEI Foundation asked if I would share the latest update on my eyesight, hoping that with the help of supporters like you, they will be able to continue their vital medical research giving me and many others suffering from low vision hope that our precious sight can be preserved.

In 2001 while studying my first year of university, I was hospitalised with a severe allergic reaction which caused my eyes, skin and lungs to blister and burn, and my extremities to perish. After five weeks in intensive care, it seemed the only way to save my life was to remove my toxic limbs. A team of skilled surgeons amputated both my legs below the knee, my left hand at the wrist and the fingertips of my right hand. It was a devastating loss to endure. Today, 17 years on, I feel immense gratitude to have survived despite my ongoing disabilities.

It will not surprise anyone who has been touched by poor vision, that of all my disabilities, it is the loss of my sight that has proved the most difficult and burdensome. My eyes’ stem cells (which repair and regenerate the surface of the cornea) have been destroyed, leaving the corneas I see through opaque, dry, painful and highly prone to infections.

Fortunately, after leaving hospital, learning to walk on prosthetic legs and with the help of visual aids and magnifiers, I was able to return to university, graduating from Arts and then Law before practising as a solicitor. I later married my lovely husband Ben and we have two beautiful boys, Rufus now aged five and Toby aged three.

Currently, the eyesight in my right eye fluctuates but on a good day I can see around five per cent of what a fully sighted person can see. My vision is very cloudy, shadowy and sensitive to light which can make it difficult to depend on. I rely on my sense of touch and my hearing as well as my family more than most mums my age.

Unfortunately, this year my left eye has become completely blind from glaucoma.

The glaucoma is most likely due to the scarring of my cornea and there is a real risk my right eye will suffer the same fate. I have the pressure checked in my seeing eye often and think a lot about what would happen if the pressure became unmanageable and the sight I have was lost forever.

I wonder how I would take care of myself and my children if I could only see black. I imagine how my heart would ache to see the faces of my loved ones again. As Christmas approaches and my family and I begin preparations to cook the Christmas lunch and decorate the tree, we will all reflect on the year that has passed. I will be grateful for another year with vision and I will most likely feel a little sadness at the loss of vision in my left eye.

Fortunately, preventative glaucoma research gives me great hope that the sight in my right eye might be saved and I will remain independent and have the opportunity to see my children grow up.

QEI is currently undertaking research to verify the ability of antioxidants coupled with anti-inflammatory drugs to protect stressed retinas from damage from diseases like glaucoma.

To continue its valuable research for another year, the QEI foundation needs $100,000. Supporting medical research is the greatest gift you can give this Christmas, with the potential of saving sight and improving lives of people with vision impairment. The QEI Foundation relies solely on your generosity to continue its work.

When I was 18 and recovering from my allergic reaction I desperately wanted my ophthalmologists to reverse my vision loss and fully restore my sight. It took me years to understand that there is no perfect fix, no magic cure. Now I am a little older and with two precious children and a loving husband I want to be here for, my focus is on preserving the sight I have.

Maintaining the sight in my right eye would be a dream outcome, and I hope that the preventative glaucoma research that QEI undertakes will help me and others.

The small vision I do have enables me to navigate my surrounds, to pack my sons’ lunch boxes and cook their dinner. Thanks to my seeing eye, I will be cooking the family lunch this Christmas with my beautiful boys at the kitchen bench next to me.

It would be easy to live in fear about the future of my eyesight and the real risks that I may become completely blind one day but that approach is not productive. Instead, I share my story and I ask for your generous support with hope and optimism that one day researchers will be able to prevent vision loss from glaucoma, and I along with those affected by it will continue to live full and meaningful lives.

Please donate to the QEI Foundation and give the gift of sight this Christmas. The donation you make today can one day save or restore the sight of someone you love.

Thank you and warm wishes,
Phoebe Young, QEI Foundation Ambassador