AlphaNet Canada

AlphaNet Canada observes the National Day for Truth and Reconciliation by honouring residential school Survivors, acknowledging past and ongoing medical harms, and committing to a more equitable health care system.

September 30 marks National Day for Truth and Reconciliation.

Today, we honour the Survivors of residential schools, the children who never returned home, and their families and communities. We recognize the lasting impacts of the residential school system and the importance of continuing to listen, learn and reflect.

AlphaNet Canada joins people across the country in observing this day.

One helpful technique for differentiating an infection from medication side effects is to have your infusion provider infuse saline through the device instead of augmentation therapy. If the same symptoms occur, this strongly suggests an infection. Always consult your healthcare provider before changing your augmentation therapy routine.

To learn more, visit the Big Fat Reference Guide: https://bfrg.alphanet.org/s/article/2-6-3-augmentation-therapy-access-device-options

Living organ donation happens when someone donates a kidney or part of their liver to a person who needs a transplant. For some people with serious liver disease, including members of the Alpha-1 community, it may offer another path to transplantation.

This week, we honour living donors, recipients, families and the healthcare teams supporting them.

Most exacerbations are caused by viruses such as influenza, rhinovirus, or adenovirus. Unfortunately, only a few viruses have a specific therapy that can make a difference in outcome. Therefore, healthcare providers test for influenza and COVID-19 because there are medications available that make a difference for these.

To learn more, visit the Big Fat Reference Guide: https://bfrg.alphanet.org/s/article/2-4-2-medication-and-treatments-for-exacerbations

This Labour Day, we recognize the dedication and contributions of workers across Canada and the many ways their efforts strengthen our communities.

From all of us at AlphaNet Canada, we hope you have a safe and restful Labour Day.

Travelling with Alpha-1? A little preparation can help make your trip safer and more enjoyable.

• Discuss your plans and destination conditions with your physician.
• Keep your travel and health documents readily accessible.
• Bring enough medication for the entire trip. When flying, keep a supply in your carry-on in its original, labelled containers.

If you travel with supplemental oxygen or receive augmentation therapy, coordinate with your providers before departure.

Find more travel tips in the BFRG:
https://bfrg.alphanet.org/s/article/2-11-1-general-travel-tips-for-alphas-on-the-move

Have you completed our family screening survey yet? Last chance to share your insights and feedback through our anonymous survey before it closes on September 8th.

Complete the survey here: https://www.surveymonkey.com/r/FLH57BQ

Help shape the future of family screening for Alpha-1 in Canada.

AlphaNet Canada is preparing to launch a new pilot program focused on family screening for Alpha-1 Antitrypsin Deficiency (AATD), and we want to hear directly from individuals and families affected by Alpha-1.

The survey is completely anonymous and takes only a few minutes to complete. Your feedback will help inform the development of this important initiative.

Take the survey here: https://www.surveymonkey.com/r/FLH57BQ

Your voice matters. Thank you for helping us shape the future of family screening for Canadians living with Alpha-1.

Gum disease starts when a build-up of bacteria, called plaque, collects at the gum line. Over time, this hardens into calcium deposits called calculus or tartar. With poor oral care, these bacteria can cause swelling of the gums, or gingivitis. They may end up penetrating the gum line and spreading into the underlying bone. Fortunately, with proper oral care, gum disease can be controlled or even reversed.

To learn more, visit the Big Fat Reference Guide: https://bfrg.alphanet.org/s/article/2-10-6-oral-hygiene-and-overall-health-for-alphas

Using oxygen at home? These home oxygen safety reminders can help protect your home and family.

• Keep oxygen canisters 1.5–3 metres (5–10 feet) from gas stoves, fireplaces, wood stoves, candles and other open flames.
• Make sure no one smokes around you while oxygen is in use.
• Secure cylinders so they cannot be knocked over, and keep tubing clear of furniture and walkways.

Oxygen can make fires easier to start and spread. Always follow your equipment supplier’s safety instructions, and never try to repair broken equipment yourself.

Save or share these reminders with someone who uses home oxygen.

Learn more in “Home Oxygen Safety Tips” in the BFRG:
https://bfrg.alphanet.org/s/article/2-7-8-home-oxygen-safety-tips