I have recently had the pleasure of getting to lend my voice, and eye, to the International Glaucoma Association. They are a terrific organisation working very hard to raise awareness of sneaky, and I say this from experience, a bloody annoying condition. More importantly, it is the biggest cause of blindness in the world and can affect anyone, at any age.
Here is a blog I wrote for the IGA members news letter. Glaucoma awareness week in June is a week to educate people on what is essential a simple condition but with devastating consequences.
Georgie contacted the IGA late last year. She has had a tumultuous time living with
glaucoma from the age of three. She is one of the most positive and optimistic
people I have met. I was so impressed with her take on the world when she said
that young people today can be so worried about life, but it is there for the living,
and she means to take full advantage of what it has to offer.
I was three years old and I turned to my Dad and said
my knees hurt. Not my eyes. My knees. Within days I
went from an ordinary, tiny, rather inquisitive three-year
old to, what my dad called, a withdrawn animal. Allow me to
give some context. At the age of three, I was diagnosed with juvenile arthritis.
This leads to uveitis, inflammation of the eye and soon enough
glaucoma joins the party.
Glaucoma is often a condition associated with the elderly. I believe it is often dismissed
for this reason but more so because you can’t see glaucoma – no pun intended. There are
no lumps, wounds or X-rays. I am here to tell you it can and does affect anyone of any
age and we should not forget this. I was three years old and I can tell you that it is ever
present and I live with its effects and experience them every day.
If you are reading this, you probably already have
first-hand knowledge of glaucoma, so sorry if this is
not new to you. But for context, the best way I can
describe the condition is ‘bad plumbing’ of the eye.
That is not to sound glib or dismissive, glaucoma is
one of biggest causes of blindness in the world and
it can have devastating consequences.
So what’s my story? Why is it that a three-year-old is diagnosed with a condition that
usually affects people much older? She has barely had the chance to use her eyes!
The answer is, I was simply very unlucky. At three years old I was diagnosed with juvenile
idiopathic arthritis. By the time I was four, I was diagnosed with uveitis and secondary
glaucoma. Who knew they came hand in hand! Glaucoma in truth was third in line and
a by-product of two inflammatory conditions caused by a rather tempestuous immune system.
That is what we believe to be the cause is an immune system attacking itself, but in truth, no
doctor is sure why a three-year-old should get arthritis and for it go on to develop eye conditions.
I find solace in blaming my immune system and simply chalking it up to bad luck. As my
dad says we get the hand we’re dealt, let’s make the best of it.
For the record, I had the most spectacular treatment by our brilliant NHS. The doctors
acted so quickly to try to stop the conditions from progressing; prevention rather than cure.
Despite their best efforts, the uveitis did take hold, shortly followed by the glaucoma and
by eight-years-old I had cataracts and consequently lensectomy. These went hand in hand
with eye drops, laser and surgical procedures as well as surgery to put drainage valves in
the eye. Now let’s stop here, that’s rather a lot to take on board.
It was a lot for me to take in too! I was so young and in truth, I didn’t really understand.
How do you explain to a three-year-old, who had all this energy and life to live, that they have
a condition that will affect them for rest of their lives? You can’t. My parents took charge and
did everything the doctors said and comforted me as best as possible.
I became quite knowledgeable about the procedures, pain and resulting discomfort so at
times my parents had to be cruel to be kind. They resisted my tantrums and upset because
they knew what was best for me. That cannot have been easy for my parents. You must also understand that we had no knowledge of glaucoma. Obviously I didn’t, as I was only three-years-old! I just cared about Rainbow Brite and Care Bears! My parents too had so little knowledge of it and certainly did not know that it could affect young people and children. We went into this completely blind, Yes, pun intended.
Now I want to be able to tell you everything about the last 27 years. All the procedures,
treatments, struggles and hospital appointments, but I cannot condense that into one blog.
I will however try to highlight the most memorable and relevant events.
Glaucoma shortly became the companion I didn’t want, or ask for. I was never far from
my specialist eye clinic. I was treated by magnificent doctors who worked tirelessly for
this unusually little girl. I was the first child of seven-years-old to have a trabeculectomy,
which is a drainage valve of the eye to relieve the pressure and protect my optic nerve.
That made me feel quite cool in truth, a minor celebrity of the hospital…well… until I had the
surgery and spent three days in hospital in total agony! I vividly recall that after surgery
I was aware that I would miss an Egyptian day at school. I was in year four primary and Mum
had made me a Princess Jasmine outfit and I really didn’t want to miss out. I wasn’t well
enough but went anyway with a very sore eye and bruised face.
For half a day, I got to be a little girl again. I must’ve looked a state but I didn’t care.
I often think it wasn’t just the excellent treatment I received but also a fierce
determination I have.
However, with all the determination in the world, my left eye gave up. By my mid-teens,
the optic nerve in my left eye had taken such a battering that it slowly lost its sight. We
felt best to focus on the right eye and retain the sight there, then fight for the eye that
could no longer be saved.
I had a retinal detachment in the left eye and I believe it never recovered from that.
That is the other complication with glaucoma; the pressure can go the other way and
a retina simply pop off. Which conveniently brings us to one moment in time of
Georgie’s strange eyes.
At 21 years old my right eye decided it wanted to be like the left. The pressure in my
right eye plummeted for no reason, detaching my retina and I was left blind for a year.
I was annoyed to put it mildly. I had no warning, no idea it was ready to leave me. One
moment I was a 21 year old, living in London, just finished my degree and ready to stalk
the comedy scene. Then one day things just got darker and darker…
Up to this point, I am not sure I ever took my glaucoma that seriously. Until that point, my parents had pretty much made all the decisions, guided by the doctors’
advice but suddenly I was grown up and things had gotten serious. This was as scary as losing my sight, the realisation that I must take full responsibility, if I wanted
total independence and the life I had planned for myself. I was once again very lucky and after much deliberation with more remarkable doctors, I have my eye back and
the sight that I had lost was restored. Nothing short of a miracle.
After that, I simply went back to living, but nothing was the same again. My eyes inform every decision I make.
Their wellbeing is the first and last thought of my day.
Practically, my life is also dictated by them. From how I position things in my room,
schedule my eye drops and ointment, never miss a hospital appointment, blood tests,
prescriptions, how I manage at work! Equally I never miss a Moorfields appointment, for
the main reason I need the reassurance my one eye is okay and battling along. I don’t go
to nightclubs, can’t see a thing in them! I never share mascara for fear anything could do
my fragile one eye damage.
They have even informed my career as a comedian and writer as they are simply an
excellent source of material! To the extent I have written a whole stand up show about
them entitled, ‘A Poke in the Eye’. My glaucoma is managed now by a shunt/tube
in the back of my eye. This was a terrific procedure as it gave me some freedom and
peace of mind. It mechanically controls my pressure, like a plumber fitting a pipe to a
faulty sink, it really is about good plumbing! I can rest knowing that, along with my eye
drops and six monthly appointments that I can get on living and not be plagued by a paranoia
that the worst will happen.
At the end of the day the worst did happen and it may happen again but now I feel I have
control of this condition, it’s not controlling me and that is crucial to living happily with
any condition glaucoma or not. Through these 27 years, especially now as I’m about to
turn 30 and feeling quite reflective, I wish I had spoken to someone and been offered counselling
or just the chance to tell a professional my fears and concerns. I’m terrible for bottling things up
and beg anyone reading this, who is struggling, not to do the same.
There are people who want to listen; make use of them! Additionally, please, please listen to medical advice and do those ruddy eye drops!
Yes, they’re annoying but they can be the difference between seeing and blindness. I
appreciate some of you may be like me, and have glaucoma which is more complicated
than just using eye drops, but don’t dismiss them. They can be a necessity for healthy eyes.
I never look back on my lengthy medical history in shame, regret or upset. It has
moulded me into who I am and provided me with patience, tolerance and endurance.
These qualities came at a price but I would not be where I am without them.
I’m determined to raise more awareness of this condition. It can go undiagnosed for
years and then the damage is done. It affects the young the old and nobody is immune
to it. Just because you can’t see something doesn’t mean it’s not there.