Last November, I attended the 14th International Conference on Thalassaemia in Greece. Here’s a brief video about the conference, and a rundown of some upcoming videos. More coming soon!
Category Archives: Thalassemia
My Speech at the National Thalassemia Conference
We are the first ones. You and I… are the first ones to live full, normal lives.
We have seen other patients die. We have seen other patients give up, because it was just too painful. We have had our hearts broken. We have been terrified of contracting HIV, of contracting Hepatitis.
We learnt to let go. We learnt to keep going.
We learnt to not spend every moment obsessing about whether the next transfusion will infect us. We persisted with our chelation treatment, even when it was painful, even when our skin was so tough, so scarred.
We learnt that we have absolutely no control over some things.
But we learnt that we have each other. Our Thalassemia community. We alone know the difficulties, and the pain. The fears we face. The scars we bear.
And along the way, we have acquired so much love, so much support. My parents are my biggest supporters. I credit them with keeping me alive. If it wasn’t for their persistence, their bravery, I know I wouldn’t be here today.
My husband, my family, my best friends. The love and support they have given to me is wholehearted and unconditional. They are not in my shoes. Yet just knowing that they are there for me, that I can call them and rant, that they try to understand what I am feeling, that they will pull me up when I am down… this makes all the difference.
So what does all of this mean for me, and for us?
Continue reading My Speech at the National Thalassemia Conference
National Thalassemia Patient and Family Conference
If you’re in the Toronto area, you can see me at the National Thalassemia Conference on October 14, 2018. I’ll be participating in a panel discussion with several other patients about how to cope with Thalassemia day to day.
Watch episode 7 now
Thank You Speech for Héma-Québec
Last night was an event for appreciation and thanks to the volunteers and donors who make blood donation possible at Héma-Québec. This speech is my heartfelt thanks to all of them. Take a look!
And don’t forget to visit my YouTube channel to subscribe.
Watch the speech now
Keeping Your Chronic Illness a Secret
Some people feel that they can’t tell even their families about their chronic illness. In this video, I talk about one woman who is hiding her child’s Thalassemia from her in-laws.
And don’t forget to visit my YouTube channel to subscribe.
Watch Episode 6 now
Top 7 Things Nurses Should Know About Thalassemia Patients
Thalassemia patients have specific needs on transfusion day. Here are the top 7 things nurses should know about their Thal patients.
And don’t forget to visit my YouTube channel to subscribe.
Watch Episode 5 now
When Do I Tell My Employer About My Chronic Illness?
So you’ve applied for a new job! When’s the best time to talk about your chronic illness with your prospective employer?
And don’t forget to visit my YouTube channel to subscribe.
Watch Episode 4 now
Here’s the article from the Canadian Business Journal about the responsibility of employers to accommodate employees with chronic illnesses:
And here’s more from the Canadian Human Rights Commission about the duty to accommodate:
Do You Talk About Your Chronic Illness on a First Date?
Should you talk about your chronic illness early in your relationship? Might you frighten off a potential partner, or is it better to be honest?
And don’t forget to visit my YouTube channel to subscribe.
Watch Episode 3 now
Getting Ready for Transfusion Day
So it’s transfusion day! What’s the best way to prepare for it?
My Thalassemia requires that I have blood transfusions every three weeks, as do many other patients with this illness. Share your experience and tips for making the day more easily!
And don’t forget to visit my YouTube channel to subscribe.
Watch Episode 2 now
How Should You React To Someone with a Chronic Illness?
Sometimes, people react with discomfort when faced with someone who is suffering from a chronic illness. Let’s discusses how to handle it better.
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