We provide patient support, education, and research for a cure for Primary Immunodeficiency (PI)
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Alberta (including the Northwest Territories) Starts Newborn Screening for SCID
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In June 2019, Alberta will become the latest province to screen newborns for Severe Combined Immunodeficiency (SCID) in thanks to the hard-working efforts of Drs. Nicola Wright, Rebecca Sparkes, Clinical Associate Professor of Medical Genetics, The Alberta Newborn Metabolic Screening Program and Newborn Metabolic Screening Laboratory, and all the families and healthcare providers who helped advocate for screening with the Alberta Ministry of Health.
The Alberta screening program also includes the Northwest Territories and joins the east coast movement spearheaded by Dr. Thomas Issekutz at IWK Health Network who started newborn screening for SCID in March 2019, building on the successful initial application made in Ontario in 2013 by Dr. Chaim Roifman, Chair and Scientific Director of Immunodeficiency Canada.
Newborn screening will detect this problem early before complications develop and allow for prompt life-saving interventions such as bone marrow transplantation and newly announced gene therapy. Diagnosis is key to the success and survival of these infants.
Current incidence of SCID in Alberta is ~1:43 000 live births without newborn screening. Compared to 1:58 000 live births in the U.S. with newborn screening. The Alberta incidence of SCID is significantly higher than what has been published with screening in the U.S. and the expected numbers may increase with screening. Currently, there are at least 1-2 cases of SCID in AB babies/year.
Alberta Children’s Hospital in Calgary offers hematopoietic stem cell transplant for patients with Primary Immunodeficiencies including SCID, and they have the ability to do various types of haploidentical stem cell transplants if indicated. They are the transplant referral centre for all of AB and NWT, and they also accept patients from SK and eastern BC. Stollery Children’s Hospital in Edmonton also has a Pediatric Immunology service that manages PI patients, including SCID, and works closely with the Alberta program for patients requiring transplants.
Immunodeficiency Canada and our PI Physician Network is determined to advocate and secure expanded newborn screening to the rest of the country for newborns born with SCID. Immunodeficiency Canada, working to saving one life at a time!
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World PI Week: April 22nd to April 29th
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World PI Week, held during the last week of April, is a global campaign that aims to raise awareness and improve diagnosis and treatment of Primary Immunodeficiency (PI). World PI Week offers an opportunity to inform and educate health policy-makers, schools, families, and the general public about PI. Organizations and groups around the world hold events, conferences, and celebrations in honour of this week.
This year's theme for World PI Week is "Putting the primary immunodeficiency patients at the centre of their care." There are over 380 different types of PI. Each type requires a customized approach to treatment. Their specific health needs should be taken into consideration in their care journey.
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World PI Week: Immunodeficiency Canada Celebration
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In celebration of World Primary Immunodeficiency Week, you're invited to Immunodeficiency Canada's Pizza PI Party. Come make your own personal pizza and celebrate with healthcare professionals, patients, family, and friends.
Details
Date:
Sunday, April 28th, 2019
Time:
11:00 am - 2:00 pm
Location:
Boston Pizza (401 Yonge Street, Toronto)
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During winter 2018-2019, Immunodeficiency Canada ran a Flu Shot awareness campaign to raise awareness about the importance of getting the flu shot. The flu shot is your best defense against the flu. It can save lives and by protecting you, preventing you from getting very sick and most importantly, by helping protect the ones you love by being less likely to spread the virus. All vaccinations are important, including the measles.
Get a flu shot every year!
It’s important that you get a new flu shot every year because:
- The type of flu virus usually changes from year to year
- A new vaccine is created every year to protect you each flu season
- Effectiveness of the flu shot can wear off, so you need a new one every year to stay protected
The flu shot is effective!
The effectiveness of the vaccine varies from season to season. It depends on how well the vaccine matches with the circulating flu viruses, as well as the health and age of the person getting the flu shot.
The viruses circulating in the population can sometimes change during the time it takes to produce a vaccine. When this happens during the flu season, the flu shot may not work as well as expected.
It is also important to remember that the flu shot protects against several different flu viruses each season. Even when there is a less-than-ideal match or lower effectiveness against one virus, the seasonal flu shot can still provide protection against the remaining two or three viruses. If you do get the flu, the flu shot may reduce the severity of your symptoms.
Getting your flu shot is still the most effective way to protect yourself against the flu and flu-related complications.
The flu shot is safe!
- Severe reactions are very rare
- You can’t get the flu from the flu shot
- Most people have no side effects from the flu shot
The 2018-2019 Flu Vaccine
This season’s flu shot will protect you against:
- Influenza A (H1N1)
- Influenza A (H3N2)
- Influenza B
We endorse Health Canada's recommendation to get childhood vaccinations.
Measles Symptoms
Symptoms can appear 7 to 18 days after exposure to the measles virus. But before you even know you are sick, you can spread the measles to others.
Initial symptoms include:
- Fever
- Cough
- Runny nose
- Red eyes
- Sleepiness
- Irritability (feeling cranky or in a bad mood)
Small, white spots may appear inside the mouth and throat. These are called Koplik spots.
About 3 to 7 days after symptoms begin, a red blotchy rash develops on the face and spreads down the body. The rash can last 4 to 7 days.
Complications can include:
- Ear infections
- Blindness
- Pneumonia (lung infection)
- Encephalitis (swelling of the brain), which can cause seizures, brain damage or death
- Premature labour, miscarriage and low birth weight if contracted during pregnancy
For more information about the measles, click on the link below:
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Exciting Changes for Immunodeficiency Canada
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As of June, Immunodeficiency Canada will be moving to a new office. Our new home will be located at
439 University Ave, Suite 848, Toronto, M5G 1Y8.
The reason we are located downtown is so that we can be close to the hospital circuit.
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Scotiabank Toronto Waterfront Marathon 2018
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On October 21st, 2018, the Immunodeficiency Canada Marathon team participated in the 8th annual Scotiabank Toronto Waterfront 5K. The weather was chilly and brisk but that didn’t dampen the spirits of our team. Starting from the grounds of Ontario Place, we made our way to Nathan Phillips Square as a team, smiling and cheering. Thank you to everyone that supported the team. Congratulations to the entire IC team for exceeding our fundraising goal, raising over $10,000!
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2018 IC Marathon Team Members:
- Cindy Chen
- Blair Cleveland
- Adam Cleveland
- Dana Ewachow
- Christopher Hamilton
- Liam Hamilton
- Carol Hutchings
- John Paul Jones
- Shirley Lau-Hamilton
- Ierene Oliva
- Brenda Reid
- Richard Thompson
- Lesley Wichstrom
- Garth Wichstrom
- Claire Wichstrom
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The Scotiabank Toronto Waterfront Marathon 2019 will be
October 20th, 2019
this year. More details to come!
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On June 20th-22nd, 2019, the Immune Deficiency Foundation (IDF) will be holding their National Conference. This conference brings together individuals from all sectors of the primary immunodeficiency (PI) community to help people with PI and their families understand and manage these rare, chronic disorders.
Throughout the conference, there are opportunities for learning, discussing, and sharing for all ages. From physicians to nurses to specialized life management experts, people with PI and their families have an unsurpassed opportunity to network with those on the cutting edge of research and treatment.
To find out more or sign up, click on the link below:
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Newsletter Editor:
Dana Ewachow
Contributors:
Shirley Lau, Brenda Reid, Wendy Shama, Richard Thompson
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Immunodeficiency Canada is supported by our Cornerstone Sponsors:
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Immunodeficiency Canada is supported by our Builder Sponsors:
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Connect with us on social media:
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