Page 13 - University Health Network 2017-18 Year In Review

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Social @ UHN Dr. James Eubanks is driven to find a cure

for a disorder that affects young girls

In the past year we had…

In many ways, Abby Congram is a typical 17-year-old. “Abby’s muscle tone will suddenly go low one day and
She likes socializing with her friends, and she’s inter- she can’t walk, when yesterday she could,” says Karen
ested in boys and music (Great Big Sea and Meghan Congram, Abby’s mother. “She has a lot of difficulty
1,580 7,492 Trainor are her favourite artists). Abby also loves hors- with what’s called the

autonomic nervous
es – there are pictures of horses all over her room, and
Tweets sent by @UHN Mentions of @UHN by the public she rides them near her home in Stratford, Ont. system, which con-
But unlike most of her peers, Abby is unable to speak. trols her digestive
She can’t use her hands to type or hold a pencil or eat. system and her heart
University Health Network She needs 24-7 assistance for all the activities of daily rate and her bladder,

@UHN living. Abby has Rett syndrome, a rare neurological and so when the
Drs. Lee, Piggott and Baltzer, three of our female and developmental disorder that affects girls almost nervous system de-

surgeons from Toronto Western Hospital take the exclusively. cides it’s not working
today, that creates a
#NYerORCoverChallenge! #ILookLikeASurgeon One in 10,000 females around the world is born with lot of pain.”
Popular Rett syndrome, a genetic disorder whose cause wasn’t
in May even known until 1999. Because it’s neurologically Rett syndrome is a
disorder without a
based, symptoms vary greatly, but they can include cure or any effective The Krembil Research Institute and
seizures, the inability to speak, irregular breathing, treatments to curb the Globe and Mail have teamed up
poor thermoregulation (maintaining proper body its debilitating and for a special content project designed
to highlight the tremendous accom-
temperature), an irregular heart rate, problems walk- painful symptoms. plishments of our scientists and
5 Retweets ing and the loss of purposeful hand use. But Dr. James Eu- research programs at Krembil.
Abby suffers from painful gastrointestinal problems banks is working to
and muscle weakness, which are also symptoms typi- change that.
cal of Rett syndrome.
Link to full story: click here.
20 Likes

Other UHN News headlines

Toronto Western Hospital earns stroke
distinction
Other UHN News headlines Patient improves day-to-day life with MS

thanks to specialized rehab
• At-home sleep apnea test now available to Ontario patients

Talking about ‘The C Word’
• Speech-language pathologists get innovative to provide patient care

• Canada’s largest hospital reports on year of medically assisted dying
Karen Congram, right, helps her daughter Abby adapt to life with Rett
syndrome, a genetic disorder that affects one in 10,000 girls around the
world. (Photo: The Globe and Mail)

12 12 University Health Network Year in Review 2017 – 18 13