Gillian Dunnes Story

Information, help & support
for those who need it.

Hi my is Gillian and I am a 41 year old mother of 4. Each
of us all have a diagnosis of NF. I was diagnosed
when I was 5. I always suffered with pain and
headaches and then as I got older, I learnt to normalise my
pain (which was a good thing).
I have quite a number of NF related issues,
including my heart, bladder, head/brain, spine,
legs, issues such as vertigo, seizures, carpal tunnel,
under developed bladder plus more.
I did miss a lot of school due to pain and illness but went
on to work in a hospital, continuing on to Trinity college
to do my nursing and numerous other courses.
Unfortunately, my NF manifested more as
I got older.
I had a specific spinal operation done in Derry,
as down here in the republic it wasn’t done before,
so I was the first young female to get this major
surgery done in the country.
This led to me having to finish working.
A couple of years later I became pregnant with my
twins, my health went downhill, in fact my pain
increased (my mindset was, there’s someone worse off
than me so I shouldn’t complain – this wasn’t the right
thing).
I managed throughout my pain and went on to have 2 more
children, and more medical procedures including fitted
heart device on one side of my ribs, removal of lesions
and tumours on my breasts and both inside & around my body.
Information and knowledge from medical professionals
wasn’t what it should be as it was relatively unknown (NF
that is).

My children all have numerous medical issues including
apnea, seizures, pain, plexiforms, lesions, learning
disabilities and Autism, all NF related, but they don’t let it
hold them back, they are the smartest, kindest children, but
they too see hospital visits, medical procedures and
illness as part of their life and don’t complain.
But thankfully our country is slowly catching up to the
rest of Europe with their knowledge of NF and, for the
first time have a clinic that isn’t fully functioning but it
can only get better. Social media has helped join The NF
community together and in turn has helped increase the spread of NF awareness, NF association
of Ireland assisting and will only benefit my children and the children of others going forward.

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