Tips for a New Hemophilia Patient and New Caregiver: Reporting from the WFH Congress

To the patient:
  • Accepting your diagnosis doesn’t mean you can’t be mad about it. It simply means you understand that the reality of your life has changed and you know you’re going to need to make some alterations. It’s completely okay to be frustrated.
  • Listen to your body. You know your body better than anyone else does. Pay attention to how it changes and what it needs. Even if you can’t understand all of the symptoms yourself yet, make sure you keep track as best you can so that you can share the information with your doctors.
  • Build a team of supporters. Yes, this illness is your illness, but you don’t have to face it alone. Don’t be afraid to ask for help from family and friends and talk to people who you know would advocate for you
  • It’s okay to feel a little sorry for yourself, but don’t let those feelings consume you. It’s your choice how you react to the news and how much you to let it dictate you and your future.
  • Don’t be afraid to talk to your doctor. Appointments should be conversations, not a lecture. If you don’t like your physician, don’t be afraid to search for a new one. You deserve a support system that works for you and with you, and your doctor should be a part of it.
  • Find a support group in your area. If you can’t find one, make one. You are not alone in this diagnosis and talking about it with others who are going through the same thing can truly help.
  • Know that your life is going to change. That doesn’t mean you are going to have to eliminate everything you love from your life, but you may have to get creative in the way you participate in certain activities. Don’t give up easily. Think outside of the box. Don’t let this illness define you.
To the caregiver:
  • Remember that no one can truly understand what it’s like to be a teen growing up with hemophilia except for the teens themselves.
  • Listen to the patient and try to hear what they need.
  • It’s easy to become consumed in the diagnosis. Don’t forget to take time for yourself to focus on your own needs. There’s only so much we can give to others when we don’t take care of ourselves.
  • If you’re also the parent, know this illness is in no way your fault. Everyone faces different challenges in life and this happens to be what your family was faced with. It will change things, but there are ways to manage hemophilia.

To patients, families, and caregivers who have recently received a hemophilia diagnosis- you are not alone. While this will be an adjustment, it’s an adjustment that is much easier to make when you accept support. Don’t be afraid to talk about this new journey, and don’t be afraid to ask for help.

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