So, you’ve just found out that you or your loved one has a bleeding disorder. It doesn’t matter if you’re just finding out at age 52, if you’ve always known that it runs in your family and you were aware that it was a possibility for your child, or if you’ve never even heard of it and your newborn child was diagnosed after a traumatic circumcision (like me!), on behalf of everyone at HemoHelper and the entire hemophilia/bleeding disorder community: WELCOME.
We’ve compiled a basic list of first-timer insights that we think will be beneficial for you to hear as you learn to navigate the mountains of information that accompany your bleeding disorder.
1- Everyone’s diagnosis is different, but even when the diagnosis is the same, your child may be more or less symptomatic than someone with the exact same levels! Some moderate hemophiliacs experience more frequent bruising and bleeds than severe hemophiliacs. Don’t get too caught up comparing yourself or your child to the next. We’re all in this together.
2- It’s ok to be overwhelmed. Bleeding disorders are overwhelming! It’s a lifelong disorder that affects a person physically and, at times, emotionally. Fortunately you are not alone. Every single day tens of thousands of people all over the world infuse, just like you. Remember that in time, you’ll be an expert on the disorder that you/your child is dealing with. You will have a system on how to deal with various situations. Things will get easier.
3- Get connected. Network. Rely on the experience of others. Most states and countries have support groups and organizations that are full of people going through similar circumstances.
4- RESOURCES ARE AVAILABLE! There are grants, programs, meetings, associations, chapters, scholarships, etc. that exist to help people just like you. You don’t have to feel like it’s all too hard and that you can’t do this. You CAN. Click here to see a growing list of resources we’ve compiled.
5- Your child will be able to live a mostly normal life. There are some inconvenient times, certainly, but with medical practices and treatment plans today, you can rest-assured that a bleeding disorder doesn’t have to be as devastating as it might first appear.
6- You will become tougher than you ever imagined. It’s never easy to watch your child suffer through bleeds, pokes, failed IV’s, surgeries, nerve damage, port infections, etc. But many hemo-parents and hemophiliacs far and wide will tell you that it really does become easier. It is life changing and it shapes you, but it doesn’t have to define you. Learn from the positive aspects of the journey.
It’s a simple compilation, but we’ve all needed to hear it along the way. We wish you the best of luck, and want you to know that we’ll be here to help.