|This month we are proud to feature our partnering organization, Inclusion BC!|
| Inclusion BC works with partners to build community and to enhance the lives of people with intellectual and developmental disabilities, and their families by building awareness, inspiring action and advancing rights, responsibilities and social justice. We provide support, education and advocacy where and when it’s needed. We advocate at a systems level for policy change and promote inclusion through public awareness initiatives and campaigns. Inclusion BC offers assistance, knowledge, and representation. They work towards policy reform at a systemic level and encourage inclusion through public awareness campaigns and initiatives. What is inclusion? The concept of inclusion involves accepting and valuing diversity, and striving to provide equal opportunities for all individuals. It is not limited to those with disabilities, but rather encompasses all members of a community. By fostering an inclusive environment, everyone is empowered to achieve their maximum potential. Inclusion BC’s annual conference, Everybody Belongs will be held May 30 – June 1, 2024. The call for workshop proposals is now open and we would love to hear from you. Share your knowledge and experience with an engaged audience. We are looking for proposals in the areas of Community & Disability Supports, Early Years Supports, Education & Child Care, Employment & Skill Development, Health & Wellness, and Housing & Income Supports. Check out our website for more information on what we’re looking for and how to apply.|
Disability Story of the Month:
Making Friends with My Chronic Illness
by Dawn Clarke
November is Pulmonary Hypertension Awareness Month around the world, an initiative that raises awareness of the rare disease “PH”, its symptoms and the need for support. It is one of many diagnoses I share with my body. PH is known as a pulmonary or cardiopulmonary (heart and lung) disease due to the
involvement of the right side of the heart. When diagnosed in 2019, it became difficult to see any light beyond it, especially after only seeing this twice before in my nursing career; I went from a caregiver to a patient using oxygen. Pulmonary Hypertension is not a clear-cut illness and can be difficult to diagnose.
Many health professionals lack expertise and experience with PH so having knowledge will help people advocate for themselves or a loved one, especially when there is no clear diagnosis or a possible misdiagnosis. The “Gold Standard” for confirming a diagnosis is by Right Heart Catheterization.
The basic pathophysiology is pulmonary arteries narrow causing less blood to reach the lungs for oxygenation and the right side of the heart must work harder to force blood through the arteries. Because the blood picks up less oxygen from the lungs, body tissues and organs suffer which causes various serious symptoms (fatigue, shortness of breath, etc.).
Pulmonary Hypertension has multiple causes. The WHO (World Health Organization) breaks it down into 5 main groups.
1 – Pulmonary Arterial Hypertension (PAH); arteries of lungs narrow, thicken or stiffen.
2 – PH due to left-side heart disease; Insufficient squeezing and relaxing of the heart or issues with the left side valves (most common type).
3 – PH due to chronic lung disease and/or hypoxia (low O2 level).
4 – CTEPH (Chronic thromboembolic pulmonary hypertension); blood clots in the lungs. Potentially, this is the only PH that can be healed with the removal of clots. 5 – PH due to unknown causes; sarcoidosis etc.
If you suspect it or are newly diagnosed and want information, it is best to go to the sources and resources where there will be valid, up-to-date information, not Dr. Google where you could find inaccurate or old information that may frighten you unnecessarily. Over the past 10 years, there have been many advancements in treatments, and survival time/rates have been significantly extended in many cases.
Pulmonary Hypertension Association of Canada https://phacanada.ca/Home is where you’ll find accurate information about PH and more detailed information about the groups above. Finding a PH clinic with access to a PH trained team including Doctors is crucial also.
Every November, PHA Canada has an annual 6-minute Walk For Breath event/fundraiser. This year, it will be held on November 18th. I will be participating in London, Ontario.
Check this site for more information or how to support us and find a cure.
Through emotional, mental, physical and spiritual healing, I need little oxygen but have been able to find, focus and work towards new goals, shift my perspective and live again.
Dawn Clarke, RN/Artist/Author
Dawn Clarke is a proud Indigenous woman, maternal side, of Ojibwe and Mohawk descent from Mississaugas of the Credit First Nation near Hagersville, Southern Ontario. Her father’s side is from Cape Breton, Nova Scotia. Dawn was born with congenital heart defects and had open heart surgery at 4 months of age. She grew up in a military family and lived, worked and travelled throughout Canada and Europe. Dawn is a mom of 2 adult sons, a new step-grandma and a soon-to-be first-time Grandma. In 2019, Dawn was diagnosed with Pulmonary Hypertension, COPD/Asthma, Diastolic dysfunction, liver disease, and diabetes and had to give up her Registered Nursing career to focus on healing and living. While working on her mental, emotional, physical and spiritual well-being, her perception of a new life, new normal and direction shifted towards a path she felt she was meant to be on. She now instructs acrylic paint wellness workshops, paint parties and studies in a Native Counseling Training Program. Her plan is to combine her love of art, singing and writing with counselling and helping others on their healing journeys. She has also become more involved with the Pulmonary Hypertension Association of Canada. Making friends with her illnesses instead of fighting against them and being thankful for how far her organs have gotten her, has really transformed her life.