This guest blog is written by 17-year-old Hannah, one of our amazing Harry’s HAT Young Ambassadors. She shares how an eye test identified her hydrocephalus.

In Hannah’s own words…

My name is Hannah and I am one of the Young Ambassadors for
Harry’s HAT. I have hydrocephalus (treated via an ETV), chiari
malformation, syringomyelia, craniometaphyseal dysplasia, and
bilateral mild-to-moderate hearing loss.

This is my story.

My hydrocephalus was identified during an eye test

When I was 9 years old I developed headaches during the night,
which would come irregularly. My parents took me to the opticians
thinking that I had vision problems, where they did an OCT scan
which creates images of the back of the eyes.

It was discovered that I had bilateral papilledema. This is when the optic discs
swell, due to pressure. It can be caused by several conditions,
but in my case it was hydrocephalus, and as a result I was sent to
A&E at my local hospital.

There, I saw a number of doctors – including an ophthalmologist – who
confirmed the pressure behind my eyes, and recommended that I
would need to go to St George’s Hospital as an emergency.

Diagnosis at the hospital

There was initially some confusion as the referral to St George’s was sent
via 2nd class letter in error. When it eventually
landed on the appropriate consultant’s desk at St George’s
Hospital, I was called in for an emergency MRI scan the next
morning.

After the MRI scan, we were taken up to the ward where my
neurosurgeon explained that I have hydrocephalus and
required an ETV to treat it. We were all really shocked and scared. I
had emergency surgery later that same day.

Genetic testing

A few months later, I underwent genetic testing to find a possible
cause for my hydrocephalus. It turned out that I have a
spontaneous mutation on the ANKH gene, leading to thicker skull
bones (craniometaphyseal dysplasia), and thereby causing a chiari,
and secondary hydrocephalus.

Ambitions for the future

Although I know that hydrocephalus is a lifelong condition, I am
lucky to have only required one neurosurgery as of current. This
experience has inspired me to become a doctor myself as I have
seen the great care of the doctors and nurses first-hand.