In Your Own Words

People living with hemophilia and their caregivers write back to their younger selves, to share personal insights and reflect on their experiences living with, or caring for someone with, hemophilia.

Novo Nordisk x RD CampaignPhoto: Novo Nordisk

Sally (36) – Mother of Zieven who lives with hemophilia A

In the summer of 2012, Sally was 29 years old, grappling with an abundance of intense experiences. A petite brunette who had grown up in Manila, Philippines, she was by now a new mother with an eight-month-old son, living in a new house in Scarborough, Ontario, and preoccupied with growing her career in IT.

Everything felt overwhelming. But that mental state was serene compared to how she suffered during a crisis that unfolded late in the evening of August 22nd. Her son, Zieven, had developed unusual bruises on his arms and legs during recent weeks. So, Sally and her husband, Paul, took him to SickKids Hospital in Toronto. While attempting to draw blood for lab analysis, medical staff had to poke Zieven’s arms multiple times before finding a vein. After they returned home, Zieven’s arms began to swell alarmingly, growing to twice their normal size. They rushed back to the emergency room where doctors told them that if they could not quickly determine the cause of the swelling, they would have to slice open Zieven’s arms to relieve the pressure. Horrible pain cut through Sally’s heart at hearing this. She had no idea what was wrong with her own child. But she couldn’t bear the thought of her baby going through such a procedure. Soon, she learned that he had severe hemophilia A, which she knew practically nothing about. Now 36, she is writing to herself seven years ago, after receiving the diagnosis on this dreadful night.

Dear Sally,

You feel awful. You are in distress. You are thinking of ways how to fix this. There are many questions running through your mind right now. “Why did this happen?” “Why my son?” “Did I do something wrong during the pregnancy?” “What do I need to do to cure my son? “When will this nightmare be over?” Emotions are tumbling through you: sadness, anxiety, disappointment and guilt over your incompetence as a parent.

You’ve always been a problem solver. You always try your best to analyze a situation and strive to make it better. But at this moment you feel helpless. You’re struggling to come to terms with this condition of your precious son, your firstborn. You are denying that this is real. And refusing to accept that your son will never be like a normal kid who has unrestricted options when it comes to sports. You are worried about his development and when he starts school. I get it. But trust me in saying this: YOU ARE DOING A GREAT JOB AS A MOM! You may not feel like it right now because you are blaming yourself for passing on the hemophilia gene to him. But it is not your fault. Still, you need to reflect on this guilt. Acknowledge it. Feel it. It’s okay to feel it. But don’t burden yourself with it for years to come. And strongly strike back by deciding that this doesn’t define you—or your son.

Everything is going to be okay. Zieven will grow up to be a kind, generous and video-game-loving kid. He will tolerate his sister’s antics most of the time. And, amazingly, he will learn to accept his hemophilia with open arms. He actually will take great pride in his pain tolerance by enduring not one, but up to five pokes a day for infusions. In closing, I will leave these words of encouragement. Don’t be too hard on yourself. You and your family will get through this with flying colours. And never doubt that you are being a good parent, because your family loves you unconditionally.

You can do it, Present-day Sally

About the campaign:

The In Your Own Words (IYOW) campaign was first launched by Novo Nordisk in 2018 to raise awareness of the impact of type 2 diabetes on patients. It was then brought to Canada and the focus turned to hemophilia and the true impact on both patients and caregivers. The unique concept follows New York Times best-selling author, Ellyn Spragins’ book, What I Know Now: Letters to My Younger Self, and is a collection of letters written by patients to their younger selves, including reflections of their experiences with hemophilia. This campaign seeks to bring together Canadians living with hemophilia as well as parents of children living with hemophilia, to write their own letters about experiences with the condition.

The letters in this book have been written by people living with hemophilia, or who have a child with hemophilia, and edited by Ellyn Spragins. The views and opinions expressed are not representative of Novo Nordisk and should not be considered as treatment advice. Novo Nordisk has permission from all participants confirming their consent to use their letters and personal details in the In Your Own Words: Reflections on Living with, or Caring for Someone with, Hemophilia book.

To read more stories like Sally’s please click here.