Page 18 - An Innovation Spirit ...

03 02 symptoms, even in the same
01 Genevieve Dalglish 02 Christine Grant holds 03 Dr. Anne Bassett, to create the clinic, knows
(left) and her mom a picture of her brother seated at the right and this first-hand. Her daughter
Camilla praise the Henry. She says the pictured here with her Genevieve was diagnosed with
positive, friendly clinic may have saved team, saw the need for 22q 14 years ago by Dr. Bassett.
atmosphere at the clinic. his life. a centralized place to The Dalglishes had been on that
work with families and diagnostic odyssey, testing Ms.
patients with 22q. Dalglish’s hearing, adjusting her
medications, getting on the right
diet and exercise plan, all to help
her. Mrs. Dalglish says, “It was
just endless, going to different
specialists.” Ms. Dalglish had two
heart operations and was seeing
a psychiatrist weekly. “She was so
ill, she must have been through
15 types of meds to try to find the
right one, and the public doesn’t
realize that the families and the
poor patients are going through
this endless in and out, in and out
of hospitals.”
The reason for these medical
odysseys is because it’s not an
easily recognized syndrome
among medical staff, much
less the public, and no two
patients with 22q have the same
16 Peter Munk Cardiac Centre
family, which can make it very
difficult to detect and treat.
“We think this is because of the
complexity of the condition and
the variability of the condition
and the lack of recognition by
doctors,” says Dr. Bassett.
This lack of knowledge can harm
undiagnosed patients. Christine
Grant knows this first-hand.
Her older brother, Henry*, now
51, spent 20 years in and out
of hospitals. He was diagnosed
with schizophrenia, had corneal
transplants and intermittent
stuttering and dragged his left
foot. Ms. Grant said that in the 20
years of trying to get a diagnosis
for her brother, many doctors
thought her brother’s symptoms
were behavioural versus medical.
“It took a long time to get
specialist treatment,” she says.
“Some physicians were completely
ignoring his needs.” It wasn't
until she met Dr. Bassett at a
conference in 2010 that Henry
got a genetic workup, with Dr.
Bassett, that revealed a diagnosis
of 22q. Henry became a patient
when the clinic opened at Toronto
General Hospital. Ms. Grant has
seen improvement and feels the
clinic, the team and the treatment
may have saved her brother’s life.
“I truly believe he would have
died by now.”
While the Dalglishes were on
their personal journey with their
daughter, Mrs. Dalglish asked
Dr. Bassett what they did at
the Hospital for Sick Children
(SickKids). Dr. Bassett replied
that while SickKids diagnosed
and worked with children and
their families with 22q, there
was a need for an adult clinic.
Thanks to the Dalglish family, the
clinic officially opened two years
ago. What makes the clinic the
first of its kind is the integrated
treatment it provides to its
patients and the ability for them
to transition from children to
adults without loss of care.
“We’ve developed a wonderful
transition program with the
Hospital for Sick Children. They
start out over there, and our staff
members go over there and walk
them across the street to Toronto
General,” explains Dr. Bassett.
The new patients, who are