Hemophilia on your terms.
Everyone’s hemophilia needs are unique. We also know that treatment alone doesn’t hold all the answers. At Sanofi, we’re always working to put more information at your fingertips so you can find your answer for what life could look like. Learn how to get more out of your care and explore tips for keeping your body strong and your mind at its best.
Getting the care that’s right for you
Whether or not you receive care at a hemophilia treatment center (HTC), you’ll likely have a whole team working to help you get the care you need.
Hematologist
A specialist in blood disorders and your care team leader
Nurses and/or nurse coordinator
Your day-to-day contact
Social worker
Connects you to resources and support for life with hemophilia
Orthopedist
A specialist in the musculoskeletal system who can help with joint health issues
Physical therapist
Helps you regain strength and mobility
Dentist
Understands your condition to provide bleeding-safe dental care
Your care team may include a different mix of healthcare professionals based on your unique situation.
Strategies for getting the most from your care appointments
Many people living with hemophilia have regular appointments with their care team. These appointments are opportunities to raise any concerns you have and make sure your treatment plan is working for you.
Keep records of any health concerns.
In between appointments, keep track of any new or unusual symptoms, or anything else you might want to talk about with your care team. Bring these notes to your appointment.
Bring a list of discussion topics.
In addition to your notes, write down all of the questions you have for your care team and anything else you want to talk about, and bring it to your appointment.
Answer questions openly and honestly.
Remember, your care team is there to help you. Make sure they have all of the information they need by not holding anything back.
Ask for clarification.
It’s important that you have a thorough understanding of your test results, treatment options, and anything else related to your health. If you don’t understand something, speak up.
Consider bringing someone for support.
You may prefer to go to appointments alone, but it can be helpful to invite a friend or family member to go with you. This person can help you feel supported, as well as ask questions or take notes for you.
Follow up as needed.
Remember that your appointment is not your only time to ask questions or raise concerns. If something comes up later, call or message your care team.
Download our Doctor Discussion Guide to help you organize your notes and questions ahead of your next appointment.
Self-advocacy tips
Knowing exactly what your priorities are—and clearly communicating those priorities to your care team—can help you advocate for yourself and the life you want.
- Have a clear sense of what you need and what you’re asking for from your care team.
- Practice what you’re going to say in advance to build your confidence.
- Be assertive without being aggressive. Always remain calm, but keep the conversation going until your needs have been addressed.
- Ask follow-up questions as needed to make sure you and your healthcare team are working toward the same goals.
Staying strong and active
Eating well and exercising regularly may open up new possibilities for your life—and help you feel your best, physically and emotionally. Here are some tips and guidance for getting the movement and nutrition your body needs.
Always talk to your care team before starting a new diet or exercise program.
Get the right nutrients
For people living with hemophilia, it’s important to maintain iron levels. Iron is lost with each bleed, and losing too much iron can lead to anemia. Keeping iron levels high means eating healthy, iron-rich foods as well as foods high in vitamin C, which can help absorb iron.
- Lean meats
- Leafy green vegetables like spinach
- Legumes like beans and lentils
- Citrus fruits like oranges or grapefruits
- Cruciferous vegetables like broccoli or kale
Manage your weight
Maintaining a healthy weight is important to avoid extra stress and strain on your joints. Along with safe exercise, a healthy diet can help you meet your weight goals. Fill your plate with vegetables, lean proteins, and whole grains. Limit foods that are high in sugar or sodium, including
- Sodas and sports drinks
- Cookies, candies, cakes, and other sweets
- Processed meats
- Sauces and dressings
- Instant or frozen foods
Tips for making the most of your fitness routine
Moving your body is a great way to build strength and improve your overall health. It can also help preserve your joint health, improving joint stability and reducing the frequency of joint bleeds. Here are some tips to help you stay active and able to live a fuller life.
For more information about exercise and joint health, visit our Joint Movement site or YouTube page. Both are dedicated to empowering people living with hemophilia to be more active.
Staying safe while exercising
Exercising or playing sports always comes with some level of risk. For adults and children living with hemophilia, that includes risk of bleeds. The risk is lower with non-contact, low-impact sports and exercises. Contact sports, like football or hockey, are not recommended for anyone with a bleeding disorder.
Activities with lower risk
- Elliptical machines
- Golf
- Hiking
- Rowing
- Stationary cycling
- Swimming
- Tai Chi
- Walking
Always talk to your care team before beginning a new activity or exercise.
Caring for your mind
Hemophilia doesn’t just impact your body. Managing your condition and dealing with symptoms can also impact your emotional well-being. To help take care of your mental and emotional health, try these strategies for managing stress and living more mindfully.
Scan your body.
Close your eyes and begin tensing up and then relaxing parts of your body, starting with your feet and moving toward your head. Identify areas of stress and tension and notice the tension ease when you relax that area.
Try deep breathing.
When you’re feeling overwhelmed, inhale through your nose for four seconds, pause, and then exhale for six to eight seconds.
Build awareness.
Focus on the world around you, rather than things in the past and future. Being more in the moment can help you deal with stressful situations.
Find compassion for yourself.
No one is perfect. As you’re working toward the life you want, remember to love the person you are, flaws and all.
Set realistic goals.
Make sure your goals are achievable. It can also help to break down larger goals into smaller steps to help you stay motivated.
Stay engaged.
As you’re workin on your health goals, make sure to keep doing the things you love, like your hobbies or spending time with friends and family.
If you need more support to feel your best emotionally, talk to your care team. You can also explore the organizations and resources below for help connecting you to the care you need.
Bleeding Disorders Substance Use & Mental Health Access Coalition
Mental Health Online Education from the National Bleeding Disorders Foundation
This listing is provided as a resource only and does not constitute an endorsement by Sanofi of any particular organization or its programming. Additional resources on this topic may be available and should be investigated. Sanofi does not review or control the content of non-Sanofi websites.
If you are experiencing any lasting feelings of sadness or anxiety, or have any concerns about your mental health, talk to your care team. If you’re having a mental health emergency, call 911 or go to the nearest emergency department.
Hemophilia voices
“I have struggled with the loneliness of this disease… If you’re experiencing any of these same feelings that I did, I encourage you to take action and advocate for yourself by voicing your concerns to your healthcare team and loved ones.”
Ben, living with hemophilia
Beyond the basics
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Through the Stages
While moving from one phase of life to the next is challenging for anyone, growing up and growing older while living with hemophilia can present unique challenges. Get guidance on navigating transitions to different life stages with hemophilia, wherever you are in your journey.
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