For Susan Koley, drinking bottled water isn't a status symbol, it's a lifesaver.
VIDEO: Susan Koley
The same goes for the second fridge in her condominium, a fridge in which she can monitor the temperature. That's where Koley, 50, keeps the lifesaving blood products she has to inject into her body every day.
'You don't know what each day will bring, but you still have to make plans' - Susan Foley
Koley has common variable immune deficiency. She needs to inject the blood products to replace the immunity her own body doesn't provide. And she needs to consume bottled water to reduce the chances of getting a gastrointestinal illness.
Unlike a few years ago, Koley no longer feels alone.
She is the Manitoba chapter director of the Canadian Immunodeficiencies Patient Organization (CIPO) and is on the board of the national organization. The charitable group is devoted to education, awareness and giving support to people with the genetic disorder.
Koley's disorder is one of more than 120 immune disorders that have been identified.
Others include severe combined immunodeficiency, which affected both American David Vetter, who spent most of his life as "the boy in the bubble," and Manitoban Renee Dueck, 23, who died earlier this year after a four-month battle to survive her latest bout of leukemia.
Dueck's passing made headlines because it was recorded and put on the Internet so family and friends could grieve together. Two of her siblings have also died of the disorder and a third sibling has been diagnosed with it.
Koley's genetic disorder has meant a lifetime of being ill, long periods of hospitalization, and having to give up her health-management job to go on long-term disability. She wasn't diagnosed until she was 46.
"I lived my entire life off and on in the hospital," she said.
"I even worked in health care for 27 years. I ended up getting a lot of infections.
"I can't work because (her treatment) causes fatigue and I can only stay awake for a short time each day," she said.
Every day, Koley sits on her couch with three syringes and spends the next three hours slowly injecting immunoglobulin into the skin above her abdomen. Any faster and she gets negative reactions.
It's a regimen Koley will have to continue every day for the rest of her life.
"It doesn't just help me from getting infections -- it also shuts down my own stupid immune system, which doesn't work the way it should," she said.
Koley's father also has the genetic disease, but a much milder case. She's thankful her three grown children have tested negative for it.
Tina Morgan, CIPO's founder and national president, said the organization began in 1996 and achieved charitable status in 1998 after she was diagnosed with a primary immune deficiency and quickly realized there wasn't a way for her to contact other people with the illness.
Today, CIPO has about 2,000 members spread across the country, but Morgan said she knows that doesn't represent everybody with an immunodeficiency.
"We know there are double that number diagnosed and not diagnosed."
Morgan said CIPO provides education, support and services for people with primary immune deficiencies and they are trying to reduce misdiagnosis. The organization produces a newsletter twice a year, holds annual general patient meetings and provides educational packages for patients. Medical specialists from across the country sit on the organization's medical-scientific advisory committee.
"We're a patient organization," Morgan said.
"Everything we do is oriented to the patient... People really need to talk to somebody, especially when they're first diagnosed. It can be very scary."
Morgan said every dollar donated goes to help people with primary immune deficiency, because she doesn't draw a salary.
Koley holds local seminars for patients, with speakers from the medical community as well as from the Canada Pension Plan to help people apply for long-term disability benefits.
"I'm here to advocate for patients and make sure they can access the latest treatment regimens."
She is also organizing a CIPO patient and family day on Aug. 24 from noon to 6 p.m. at St. Vital Park in the summer-shelter picnic area. If you plan to attend, call Koley at 489-2432 or e-mail susan.koley@gmail.com
Koley admits that some days are better than others.
"You don't know what each day will bring, but you still have to make plans," she said.
"Most of my family know you may not have the energy to do something that day and we'll have to do it another time. And you never know when you're going to need a 24-hour sleep.
"But it's better than being tied with a ball and chain to the hospital."
To help CIPO and its local branch, donations can be sent with Manitoba on the memo line of a cheque to: CIPO, 362 Concession 12 East, RR#2, Hastings, ON, K0L 1Y0. Or call 1-877-262-2476 for more information.
kevin.rollason@freepress.mb.ca
Warning signs
Common signs of primary immune deficiency:
Chronic sinus and/or ear infections
Recurrent pneumonia
Failure to thrive in children with chronic infection
Family history
Intravenous antibiotics needed to treat infections because regular oral antibiotics don't work
Chronic diarrhea
-- Source: Canadian Immunodeficiencies Patient Organization
VIDEO
Susan Koley talks about living with
primary immune deficiency.
winnipegfreepress.com
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