Where are they now? Getting used to the new normal
By Kim Avanthay
Myson, Austin Avanthay was diagnosed with lymphedema when he was one year old. He graduated from Grade 12 in 2023 and will soon be 19 years old (June 2024). He stopped playing minor hockey when he was 13, when hitting was introduced into the game. His hockey days were over, not because of his lymphedema but because he was now also feeling leg and back pain due to scoliosis.
My message to parents is to learn all they can about lymphedema from reputable sources and provide their children with the knowledge and tools they need to manage this condition.
Austin had back surgery due to scoliosis (rods, screws and hooks) in May 2020 at the age of 15. He still likes to be active, shooting hoops and working out at home. He really enjoys tennis and tries to get to the outdoor courts to play, but that doesn’t happen as frequently as he would like. He has recently taken up guitar and has lessons once a week.
In regards to Austin’s lymphedema, he has been very fortunate. We have been learning about this condition since he was just one year old and are somewhat lucky that he hasn’t had any real complications. I recall when he was in middle school, a teacher’s aide wrote in his agenda that he had a scratch on his knee, which looked very angry. Thankfully, we were able to manage it with antibiotics. Still, it was just another reminder
Kim Avanthay lives in Lac du Bonnet, Manitoba. She founded the Lymphedema Association of Manitoba and also served as the CLF Board Secretary from 2016 –2020, where she provided the “parent of a child with lymphedema” perspective to many of the CLF’s initiatives.
of how quickly things could turn if you didn’t look after your lymphedema. Austin looks after his skin and isn’t as compliant with wearing compression but is doing fine in the maintenance phase and does self-massage. Did I mention we are lucky?
We still chat about our wonderful experience at the International Lymphoedema Framework (ILF) children’s camp many years ago. Austin remembers the other kids he met and how some had severe lymphedema. As Austin was very young, he may not have appreciated that experience as much as I did. I realized we were not alone and that we were lucky to be able to manage his condition as we have. We were also fortunate to have found a knowledgeable and caring therapist to guide us through.
My message to parents is to learn all they can about lymphedema from reputable sources and provide their children with the knowledge and tools they need to manage this condition. Find a certified therapist and age-related support groups for them (and you), as they will need that support from someone who has or is going through it. Join a provincial lymphedema association. Don’t project your fear of this condition onto your child. I was so scared of Austin getting an infection or his lymphedema getting worse that I may have put limitations on his growing up that I didn’t even realize. Now that he is a young adult, he lives with many fears and anxiety.
Most importantly, don’t beat yourself up. There will be a new normal that you have to get used to. Know that you are doing your best to support your child and find time for your own self-care. LP