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!
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?
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.