My Story

Growing up with a bleeding disorder

Von Willebrand disease type 3, difficult experiences, and how this was all shaped into becoming a mission.

Introduction

Hi! I'm Vasudha Madhusudhan, a freshman at Shrewsbury High School in Massachusetts, and when I was 9 months old, I was diagnosed with von Willebrand disease type 3, which is the rarest and most severe form of the most common inherited bleeding disorder in women. Because of this, my blood doesn't clot the way it's supposed to, since my blood is missing almost all of a protein called Von Willebrand factor. So now, I bleed much easier and heavier than the average person would.

When I was diagnosed at such a young age, my parents had no idea what to do. That was the first time they had ever heard about this disease, and they were panicking. They didn't know if I was going to be able to live a normal life, or raise a family in the future. But finally, my parents ended up taking me to the hematology department at Boston Children's Hospital, where they were assured that everything would be okay. They also got to join conferences and meet people who had the same disease as me and were doing great. To be honest, it took me a long time to understand my own disease. When I was around 6 years old, I used to think that clots were sold in stores like CVS and that they were bad for me. Clearly, that's not the case. I even used to try to take out clots from my nose bleeds because of this, but that didn't end well. So, there were so many things me and my family were confused about, but eventually, we all got to understand my bleeding disorder.

Vasudha smiling in front of brightly colored houses Vasudha standing by a tree at a lakeside

What it's actually like

I get my infusion twice a week, on Mondays and Thursdays. When I was in daycare, a home nurse would come and infuse me. In elementary school and early middle school, I would get called down to the nurse's office to get my infusion. In 5th and 6th grade, I used to be very embarrassed about my disorder, since every time I would get called, everyone would stare at me and ask where I was going. To be honest, maybe I was just imagining the staring part, but I was still really embarrassed. Not only that, I hated the fact that I couldn't participate in fun activities, like climbing the rope in gym, or not being able to go on my friend's trampoline, or not being able to go on the fun bouncy houses at the carnival. It was always so annoying to me that I couldn't play any sports like my friends. I always felt left out, because I always had to worry about whether I would bleed or get a bruise. When I got my period, it was so difficult. I couldn't even have a normal day without worrying. I went to the hospital multiple times, and I always wondered why I couldn't have a regular period like my friends.

"I hated missing everything because of my bleeding disorder, and the worst part was that nobody in my class even knew how I felt."

The part nobody sees or knows

I can bet that when someone meets me for the first time, they have no idea that I have a bleeding disorder, and sometimes they might not even know what that is. And that's the case with other kids at school who have different invisible illnesses - like diabetes, Crohn's disease, or arthritis. There's so many more invisible illnesses, but we all go through the same thing. We might look like we're okay, but sometimes we're not.

The amount of times I've been told "You're fine" just demonstrates the definition of an invisible illness, because what if I'm not fine? What if I tell my gym teacher that I got a bruise from falling and I need to go to the nurse's office, but they tell me that I'll be okay because I wouldn't have gotten a bruise so easily? The thing is, I did get a bruise that easily. One time, I randomly got my period when I was playing flute in a concert, and I was too embarrassed to tell my conductor even though it was heavy. Obviously, everyone around me didn't know how much I was struggling at the moment.

Why I started FunnyBlood

For three reasons:

  • For girls like me: One in ten women with heavy periods have Von Willebrand Disease. The struggles that girls like me go through are so overlooked. I want every girl to know what's "normal" and what isn't.
  • For every kid with an invisible illness: Life and school is so much easier when everyone else knows what you're really going through and understand. I want to help raise awareness for invisible illnesses so that the struggles of those who have these aren't overlooked.
  • For kids who weren't born lucky like me: I got lucky by being able to have the best treatments and hospitals accessible to me right where I live. However, for kids with my condition who live in rural areas with no access, it's incredibly hard to handle their condition. If it's hard with resources, it must be impossible without them. It doesn't sit right with me that they are most likely struggling so much, so I decided that I need to help.

This project is how I turn my diagnosis into something that can help many. Thank you for reading this!

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