What I wish my parents had known after my ITP diagnosis

When I was diagnosed with immune thrombocytopenia (ITP) at 8 years old, I knew my life was changing, but I didn’t fully understand just how much my diagnosis would affect the people around me. My parents did all they could to protect me from the anxiety of living with an autoimmune disorder.

At that age, my biggest concerns were missing school, being separated from my friends, and wondering when life would return to normal. What I didn’t appreciate was the emotional roller coaster my parents must have been experiencing behind the scenes. This was completely alien to me, but rightly so. It wasn’t something an 8-year-old should have been concerned about.

Now, as a mother of two daughters, I look back on those years with a completely different perspective. As a child, I was the patient. My parents had to be strong. And only now, as a 34-year-old mother myself, can I see the pain, heartache, and anxiety they must have been going through from the very first signs of ITP, to the diagnosis, to then having to watch me live with the disorder.

They were the ones listening to doctors, trying to understand platelet counts, learning about bleeding risks, and making decisions about my health. They had to balance protecting me with allowing me to experience as much of a normal childhood as possible. I can’t imagine the fear they felt.

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The uncertainty of an ITP diagnosis

Daisy Souster was diagnosed with ITP at age 8. (Courtesy of Daisy Souster)

One of the hardest things about ITP is its unpredictability. Platelet counts can fluctuate, symptoms can change, and there isn’t always a straightforward answer about what happens next. For parents, that uncertainty must be exhausting. At one point, my mother used to take me to get my platelets checked every single day. Sometimes my platelet count would be 0, and sometimes it would be 90. (A normal count for children is 150,000 to 450,000 platelets per microliter of blood.)

I remember how different my childhood became following my diagnosis. There was a period when I couldn’t attend school and instead received tutoring at home. Again, this wasn’t just a change for me, but also for my parents, who had to juggle work, my siblings, and having me out of school while still needing to be taught.

Protection versus independence

As a parent myself, I now understand that instinct to protect your children from absolutely everything that could hurt them. When your child has a bleeding disorder, that instinct must become even stronger.

Every bump, fall, or unexplained bruise can become another reason to worry, but children also need opportunities to explore, build confidence, and feel included.

I imagine finding that balance was incredibly difficult for my parents.

Eventually, following specialist medical advice, I returned to school. That was an important milestone for me, but I recognize now that it may have required an enormous amount of trust and courage from my family.

What I would tell my parents today

If I could go back and speak to my parents during those early years, I would tell them that they didn’t need to have every answer.

I would remind them that being frightened didn’t make them any less capable of looking after me. I was frightened, but I had two supportive parents offering me the love I needed.

Most importantly, I would thank them for the sacrifices I probably didn’t notice at the time. Well, I definitely didn’t notice them at the time, but looking back now, I have a whole new respect for what they went through emotionally and physically following my diagnosis.

Because while ITP was happening to my body, it was affecting our entire family — and I can see that now.

Today, my platelet counts are normal, and I have been fortunate enough to live without active ITP for many years, but becoming a mother has given me a greater appreciation of what my parents went through.

I also want other parents navigating a childhood ITP diagnosis to know that their emotional well-being matters, too. Please remember to be kind to yourself.

Ask questions. Seek support. Share your worries with healthcare professionals and other families who understand.

And remember that, alongside managing platelet counts and medical appointments, you’re helping your child build a life beyond their diagnosis.

Looking back, I don’t remember every blood test or medical conversation. What I remember most is being loved, supported, and protected. And perhaps that’s the greatest thing my parents could have given me.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.