A diagnosis affects the whole family. It is important to understand how different family members, including your siblings, may react to hearing about your diagnosis. Working together as a family and establishing open communication, trust and expectations can create resilience as you learn to navigate a blood or bleeding disorder together.
This section of Family Life covers:
What Happens After a Diagnosis
What Happens After a Diagnosis
You and your family’s life has changed since your diagnosis with a blood or bleeding disorder. You and your family members may have questions or concerns about your diagnosis. While you may have new responsibilities when managing a bleeding disorder, it's important to see yourself as not just a disorder. It's equally important to make sure others do so as well.
Here are some common questions and concerns many people have when first hearing the diagnosis:
A. In the past, viruses like hepatitis A, B, and C, and HIV were passed from blood donors to people with hemophilia through factor treatments. Today these products are safer. The risk of getting these viruses through treatment products has been dramatically reduced by the following:
Screening of all blood donors for hepatitis and HIV
Purification and treatment of all human blood products to kill all known viruses
Development of recombinant products that have little or no human blood proteins
To be even safer, it is recommended that people with bleeding disorders receive immunizations for hepatitis A and B. There are currently no immunizations available for hepatitis C or HIV.
If you want more information about blood safety, please go to Blood Safety and Community Counts.
A. Yes! In fact, you should get plenty of exercise. Physical activity builds strong muscles that help protect the joints. Some of the more commonly recommended activities for people with bleeding disorders include swimming, bicycle riding, walking, jogging, tennis, golf, dancing, fishing, sailing, and bowling.
Talk to the Hemophilia Treatment Center staff, especially the physical therapist, about safe physical activities.
Talking to other blood or bleeding disorders community members can also be helpful.
Invite other family members and friends to be physically active with you.
Get involved with other activities too. The arts offer many ways for creative expression.
You may want to try the activities that are popular with friends or peers. If these activities cause pain or bleeding episodes, you may need to make changes to the activity to accommodate your needs or stop the activity all together. You should always talk to your health care provider before beginning any new activity.
If you would like more information about the risks of different sports, please go to Playing It Safe.
If you would like more information about safe physical activity practices, please go to Physical Activity.
Siblings
You may not know how your siblings might react to a bleeding disorder diagnosis. Siblings may express different feelings and emotions and setting aside time to talk about these feelings can help your siblings develop the skills to cope. Your Hemophilia Treatment Center (HTC) team may be able to help if you and your family members are having trouble talking to each other.
Talking with Siblings About Bleeding Disorders
It may be useful for your siblings to understand the genetics of bleeding disorders. You can help your siblings know about how bleeding disorders can be inherited, and what kinds of tests are available. Your siblings may find value in testing for clotting factor levels or other bleeding disorders as these tests can help your siblings understand their own health and make informed decisions.
If you want more information about genetics of bleeding disorder, please go to How Does a Person Get a Bleeding Disorder?
If you want more information about testing for bleeding disorders, please go to Carrier Testing.
Having trouble getting the conversation rolling? Here are some conversation starter tips:
Ask concrete questions first
Ask open-ended questions
Keep questions simple
Keep questions specific
Ask follow-up questions
Pay attention to body language. Sometimes people say one thing, but their body language says something else
Tips for helping family members understand your bleeding disorder:
This will help your siblings understand more about your disorder
Encourage them to ask questions and keep them informed!
Teach how your blood or bleeding disorder affects your body, and how it makes you feel.
When you have a bleed, reassure them that you will be okay.
If your family members are interested in helping, give them a task.
Younger siblings can help organize the treatment supplies, pick out fun adhesive bandages, or hold an ice pack.
Older siblings can help with more complex treatment tasks.
Some chapters have programs specifically designed for siblings.
There are lots of camps where family members get to join in on the fun and learn more about blood or bleeding disorders. They will get to meet other community members and share their own experiences.
Talk to your children about all the feelings they might have about their sibling’s bleeding disorder. For example: You seem upset. It's okay to feel that way. This has been hard on you, hasn't it?
Share your feelings, both positive and negative. For example: I feel that way sometimes too.
Helping Siblings Explain a Bleeding Disorder to Others
Family members may be asked about your bleeding disorder by friends and peers. Here is a simple answer that a sibling might use:
My sibling [SIBLING NAME] has a bleeding disorder called [NAME OF THE DISORDER]. This means [THEIR] blood doesn't work right. When [SIBLING NAME] gets bumps and bruises, it just takes a little longer for [THEM] to heal.
Spouses and Partners
There was a time when your "family life" consisted of you and your parents or caregivers, siblings, grandparents, and whoever else helped raise you, care for you, and love you. As you get older your “family life” changes and may eventually include a spouse or partner. It will be difficult to predict how your spouse or partner will cope with your blood or bleeding disorder. Setting aside time for talking can help both of you build coping skills and help family members know their feelings are acceptable and valuable. If you and your spouse or partner are having trouble talking with each other, the social worker at your Hemophilia Treatment Center (HTC) may be able to help.
Talking About Testing for Bleeding Disorders
Testing can provide valuable information for families. Testing for clotting factor levels or other blood or bleeding disorder aspects can help family members understand their own health and make informed reproductive decisions. Help your family members understand the genetics of bleeding disorders and what testing is like. It can be helpful to talk about the tests that are available and how the results can affect a person.
If you want more information about genetics of bleeding disorder, please go to How Does a Person Get a Bleeding Disorder?
If you want more information about testing for bleeding disorders, please go to Carrier Testing.
Having trouble getting the conversation rolling? Here are some conversation starter tips:
Ask concrete questions first
Ask open-ended questions
Keep questions simple
Keep questions specific
Ask follow-up questions
Pay attention to body language. Sometimes people say one thing, but their body language says something else
Tips for helping spouses and partners understand your bleeding disorder:
This will help give them a better understanding of what kind of treatment you need.
Encourage them to ask questions and keep them informed!
Teach how your blood or bleeding disorder affects your body, and how it makes you feel.
When you have a bleed, reassure them that you will be okay.
If your spouse or partner is interested in helping, give them a task.
For example, they can help gathering supplies infusion or injection supplies, creating sterile field, and logging infusions or injections.
Some chapters have programs specifically designed for spouses and partners.
There are lots of events where family members get to join in on the fun and learn more about blood or bleeding disorders. They will get to meet other community members and share their own experiences.
Encourage your spouse or partner to share their feelings.
Show empathy.
Share your feelings too, both positive and negative.
Becoming a Resilient Family
Living in a family with a blood or bleeding disorder can be stressful at times. Caring for someone, or more than one person, with a bleeding disorder can disrupt normal family routines. While managing a blood or bleeding disorder can be challenging, try to be open and accepting of the many definitions of what is normal. The most resilient families are those who work together as a team to manage the responsibilities of a bleeding disorder.
Here are some ways for your family to successfully manage a bleeding disorder: