By Lupus Ontario
The podcast currently has 19 episodes available.
In this episode of the Shared Stories Podcast, we feature two inspiring lupus warriors, Alex Gnydjenko and Joseph Gallagher, who openly share their journeys with lupus. They discuss the challenges they've faced, their strategies to navigate life with the condition, and how they've found resilience and strength along the way.
The conversation is filled with valuable insights and practical tips for others living with lupus, offering hope and guidance for those on a similar path. Tune in to hear their stories and gain inspiration from their experiences.
For Lupus Awareness Month this May we are featuring two stories from lupus warriors: Heidi Nielsen and Sunita Mandi.
Heidi shared her story during our Lupus Ontario Gala speaking about how important it is to be your own advocate, while outlining her various symptoms and treatments. “We must find what works best for our bodies.”
To view the video referencing Heidi’s story: https://www.youtube.com/watch?v=uIj8rFBgEZA
Sunita spoke about her journey, focusing on the challenges of the past two years. Advocating for herself, trusting her rheumatologist, exploring new treatments, and leaning on her support team has brought her to a healthier place in her lupus journey.
Join us for these fascinating stories.
If you are looking for a support group to join, visit www.lupusontario.org/support/.
For more information about lupus, visit www.lupusontario.org.
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www.lupusontario.org
Our conversation today is on the Transition of Care - from Pediatrics to Adult Care. We are pleased to be joined by Dr. Stephanie Wong and Nameerah Hasan for today’s conversation.
Dr. Wong is the 2022-2023 Lupus Ontario Geoff Carr Fellow. Having completed her MD at the University of BC, Dr. Wong is expanding her clinical experience at SickKids Hospital in Toronto and also attending the transition clinics at Mount Sinai and Toronto Western.
Nameerah Hasan is a lupus warrior. Contracting double pneumonia and experiencing a month-long hospital stay at the age of 12, Nameerah began exhibiting other hallmarks of lupus such as fevers, muscle and joint aches, migraines and blood clots. She was treated by the incredible team at SickKids Hospital and eventually diagnosed with SLE and Antiphospholipid Syndrome.
Enjoy the conversation!
In this episode we speak with Dr. Zahi Touma, Director of the Lupus Program at UHN in Toronto, Ontario about organ damage caused by lupus, but also damaged potentially caused by treatments for the disease.
Please send us your lupus questions: [email protected]
Note: this podcast is not intended to convey health information specific to a person's health journey and is intended for educational purposes only. For concerns about your specific health journey, always contact your physicians and/or medical team.
Today on the podcast we have a very special guest – Mary McNeil joins us to speak about Sjogren’s disease (www.sjogrenscanada.org).
Sjögren’s is a chronic, systemic, inflammatory autoimmune disease that usually attacks and damages salivary, tear and mucous secreting glands. This results in dry mouth which can impact the ability to communicate verbally, dry eyes, or even internal organ damage, arthritis, painful weak muscles, neuropathy, and debilitating fatigue.
Lupus patients often have associated illnesses, Sjogren’s is among the most common experienced by those with systemic lupus with some estimates indicating up to 19% of those with SLE also develop Sjogren’s disease.
Like lupus, Sjogren’s is difficult to diagnose and 90% of those diagnosed are women.
Mary McNeil is the Vice Preside of the Sjogren’s Society of Canada and also lives with Sjogren’s disease.
Be sure to checkout the 2022 Walk For Lupus event page:
https://www.lupusontario.org/walk/
Register for our virtual symposium and tune in from anywhere in the world!
https://pheedloop.com/register/EVEDNDOVRDCBM/attendee/?
For today’s podcast we have a special guest with us sharing her lupus story. Rupee discusses her diagnosis at a young age with lupus, the complications that arose and the importance of having a support network. We talk about how she satisfied her natural curiosity to learn about lupus and how her journey helped shape where she is at today.
Visit our website (www.lupusontario.org) or our social media to register on May 19th, 2022 for the virtual Lupus Symposium taking place on October 22nd, 2022. The symposium will bring together leaders in medicine, research, health-tech and even policy to further support the community we care so deeply about.
Register for the 2022 Symposium!
https://pheedloop.com/EVEDNDOVRDCBM/site/home/
Let us know what you want to see in a Lupus Symposium! Email is at [email protected].
Have you ever considered naturopathic medicine to help you through your health journey? Have you wondered what a visit to a naturopath might look like or what a naturopathic practitioner can do for lupus or other chronic illnesses? If so, then you'll love this episode!
Today we speak with Dr. Sasha Coleman, ND about naturopathic medicine. We discuss specifically how a lupus patient may benefit from a naturopathic approach, but also of other chronic illness as well. We talk about the tools and approach naturopathic medicine can take in assessing, treating and helping to prevent illness, as well as what that first meeting with a naturopathic doctor is like.
Please stay tuned to the Lupus Ontario Podcast and Lupus Ontario Social Media as we move closer to the month of May. As many of you know, the month of May is Lupus Awareness month and specifically May 10th has been declared Lupus Awareness Day in Ontario. We will have special announcements throughout the month of May. Please stay tuned for some exciting events to come!
We are joined today by Mustapher who takes us through his lupus journey. Mustapher opens up about how the illness first began and the symptoms he endured, the complications that arose as the disease impacted his brain, kidneys, skin and heart.
We also speak about how he was eventually diagnosed with lupus and how his life changed over that time. His journey was complex and the impact on his life profound, but his story has an unexpected and wonderful ending.
Join us for this great conversation.
For more information about lupus, support and resources, please visit www.lupusontario.org.
We are joined today by Dr. Tala El Tal to discuss lupus from the pediatric perspective.
Dr. El Tal has recently completed her pediatric rheumatology fellowship at The Hospital For Sick Children (SickKids Hospital) in Toronto. Her clinical research interest focus on cognitive impairment, as well as mental health screening and interventions. Dr. El Tal is also the recipient of the 2021-2022 Geoff Carr fellowship awarded by Lupus Ontario to further research and practice in the area of lupus.
If you would like to donate to lupus research, or to the Geoff Carr fellowship to help train the next generation of lupus specialists (lupologists), please visit: https://app.etapestry.com/onlineforms/LupusOntario/membership.html
If you have comments or suggestions please write to us: [email protected].
The podcast currently has 19 episodes available.