Woman’s Weekly Health
Helped Us Cope
With Our Illness
Paula learned
more about
her condition
via the group
Paula Davis, 57, from Bristol
‘After two years of unexplained
episodes of confusion and weight
gain, I finally had a diagnosis. But
I was still not much the wiser. On
Google, I just found overwhelming
amounts of fairly incomprehensible
medical information. I wondered if
there was a Facebook group and,
when I searched, I found Enola’s
name. It was such a great relief to find
someone with the same diagnosis. I typed her a message, introducing
myself and telling her about my
diagnosis. I was the first person to
respond to her Facebook page and
she got back to me immediately.
So began a wonderful friendship.
Enola was about a year ahead of me
Thanks to the internet, three women with a rare health condition
connected and have become lifelong friends — and seen each
other through some tough times. Tanya Pearey reports
E
nola, Paula and Fleur all suffered from similar, perplexing symptoms.
For years, they used food to help them cope with unexplained feelings
of confusion or exhaustion, dizziness, headaches and weakness that
only food, especially sugary foods, seemed to control. Eventually, all
three were found to have an insulinoma, a tumour growing on the insulin-making
cells of the pancreas.
Although 3,000 cases are diagnosed each year — mostly in women — Enola, Paula
and Fleur felt very alone. But now, through Facebook, they and others have found
the support and friendship they need.
Enola Wright, 51, from
Aldershot, Hampshire
Enola set up
a Facebook
group about
insulinoma
28 www.womansweekly.co.uk
‘It was 2007, and I’d just been
diagnosed with a tumour on my
pancreas — an insulinoma. I typed
the word into Google and up popped
several pages. But, scanning the pages,
I realised everything related to ferrets!
Apparently, insulinomas are common
in ferrets. I desperately needed to talk
to someone who’d been through
a similar experience, so I set up
a forum on an existing website,
www.insulinoma.co.uk
This worked well until after a while it
became a target for rogue postings
and illicit advertising. That’s when
I set up the Insulinoma Facebook
group. It’s a closed group, so
anyone can visit it and see
who we are, but only members
can see posts.
The first person to visit the
group was Paula. We quickly
became friends — we had
so much to share. I speak
to her on the phone at
least once
a week —
Paula and
sometimes
Enola meet
every day, if one
up when
of us is having
they can
a difficult time.
And now, with
Fleur, we share
the administration — making sure the
group stays on track and that posts are
just about insulinoma. We also meet up
around three times a year.
Our Facebook group now has 138
members worldwide. We’ve produced
an e-book and are about to get charity
status for our support network.
Despite a major operation six years
ago to remove the tumour, as well as
my spleen and eight lymph nodes,
which the tumour had spread to, my
insulinoma has returned. I’ve had two
more ops and treatment for
complications. But, throughout it all,
I’ve never felt alone, thanks to the
support of my online friends.’
What’s an insulinoma?
● It’s a tumour, usually
non-cancerous, in the insulinmaking cells of the pancreas,
which makes your body
produce too much insulin. This
causes blood-sugar levels to
plummet, which, in extreme
cases, can lead to brain
in her diagnosis and treatment, so she’s
been a mine of information. But, more
importantly, she was the first person
I found outside the medical profession
who’d even heard of insulinoma. And she’s
been there for me throughout.
Although I live alone, my family and
friends have been a tremendous support
— but it’s Enola who really understands
what I’m going through, because she’s
been there herself. We were unlucky
because both of us have recently
discovered that our tumours have
spread and become cancerous, which
is very rare. Fortunately it’s manageable
and slow-growing and the professionals
are keeping a close eye on us. I try to see it
as a kick to get on and enjoy life to the full.’
damage or death. Sufferers
can manage the blood-sugar
lows by eating sugary foods
— but not indefinitely.
unknown. Most sufferers
may wait at least two years
for a correct diagnosis, and
many wait years, because
the illness is so rare and little
known, and symptoms can
be vague and confused with
other conditions.
treatment is usually surgery
to remove the tumour. In
10% of cases, the insulinoma
is malignant and will have
spread to somewhere else
in the body, usually the
liver, and may require chemo
or radiotherapy.
● Around 3,000 cases are
diagnosed a year, mostly in
women, but the causes are
● Insulinomas can be
diagnosed through a simple
fasting blood test, and
● For more information, visit
Insulinoma Support Network
(www.insulinoma.co.uk).
Fleur Horslen, 43, from Colchester, Essex
‘Last summer, I was boating on the Norfolk
Broads with my husband, David, and our
10-year-old son, James, when I started
to panic. It was lunchtime, but we were
miles from a pub. I began ransacking the
cupboards for food.
Then I remembered... I didn’t need to
panic. I wasn’t going to get confused and
pass out. That was the old me — the “me”
with a tumour growing on her pancreas. The
person who was told she had stress and that
her symptoms were all in her head. Who
gave up her job as a PA, because she was so
depressed she could barely leave the sofa.
It was only when I passed out in the shower
and gave myself a black eye that I was
referred to yet another endocrinologist and,
at last, when she looked at my blood-sugar
readings, she suggested insulinoma. Tests
confirmed that I had a 1cm lesion on my
pancreas, making it over-produce insulin,
which dramatically lowered my blood
sugars. Apparently, I was a textbook
case. David and I looked at each other
and just laughed. For years I’d been told
that my symptoms didn’t fit any illness,
but here I was: a textbook case!
Last May, I had an 11-hour op to
remove the tumour, my gall bladder
and duodenum, and part of my
pancreas and stomach.
Recovery has been slow, but I feel
stronger every day, and all those awful
symptoms have gone. Before the
diagnosis I weighed 17st and was a size
22. In the past year, I’ve lost 4st without
trying and my confidence is returning.
Through Facebook, I’ve been in
touch with Enola and Paula and
now others. And it’s been such a great
help. I can’t imagine how life without
hypos is going to feel — it takes a bit
of getting used to but, boy, am I enjoying
every moment!’
Fleur has been helped
on her way to recovery
by the Facebook group
Woman’s Weekly 29