You’ve Just Been Diagnosed With Hemophilia. Now What?

Posted on October 3, 2019

We all respond differently to information about our health. After learning you or a loved one has a bleeding disorder, you might be stunned, scared, or even relieved to have answers that explain bruising, spontaneous bleeding, and joint pain. No matter what you’re feeling, you’re not alone. On MyHemophiliaTeam, there are thousands of others who have been in your shoes.

You can’t figure out everything about hemophilia at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.

Create Space for Hemophilia
It’s normal to feel out of control when you first learn you or your child has hemophilia, von Willebrand disease, or another bleeding disorder. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.

Put Everything in One Place
Storing all of your printed doctor’s visit summaries, pamphlets about bleeding disorders, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system - a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.

Remember Your Questions
Keep a list of questions about hemophilia for your healthcare provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to your appointments so you can remember your questions and write down the answers.

Manage Your Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your new doctor’s visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments.

Manage Your Treatment Schedule
If you infuse clotting factor regularly to prevent bleeds - also known as prophylaxis - you can manage your infusion schedule using a paper medication tracker or download a medication tracking app to your smartphone. Some apps can also help you track bleeds and clotting factor supply.

Reach Out for Support
It can feel overwhelming to reach out after receiving a hemophilia diagnosis, but you don’t have to face your or your child's diagnosis alone. Support from loved ones, your medical team, and other people with bleeding disorders is crucial as you embark on a treatment plan and adjust to your new normal. There are a few basic steps you can take to start building your network of support.

Hemophilia Communities
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or be comfortable joining an in-person support group. That’s ok. Connecting with members on MyHemophiliaTeam can be a first step towards finding support. Your community on MyHemophiliaTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with a bleeding disorder or want to celebrate a victory.

Healthcare Providers
Many hospitals and medical practices offer resources that extend beyond your medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.

Friends and Family
Sharing your or your child's bleeding disorder diagnosis with friends and family can be hard. They may be afraid and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear.

Learn More About Hemophilia
You might not have known much about bleeding disorders before your diagnosis, but now you probably want to learn more. Your healthcare provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your healthcare provider or patient liaison if you have questions about something you’ve read.

Here are a few resources to get you started:

You never have to feel alone when you or your child is living with hemophilia, von Willebrand disease, or another bleeding disorder. Members on MyHemophiliaTeam are always available to answer questions and offer encouragement when things get rough.

Here are some conversations from members on MyHemophiliaTeam about facing a new diagnosis:

If you have a pressing question, you can go straight to the Q+A section.
You can also read more about how to get started on MyHemophiliaTeam.

For the newly diagnosed, what information are you seeking?
For the hemophilia veterans, what do you wish you knew when you were first diagnosed?
Share in the comments below or directly on MyHemophiliaTeam.