Navigate the moments that matter
From everyday routines to major milestones, find guidance to support life with a bleeding disorder.
Brian lives with Factor 8 deficiency.
Getting Ready for College
Planning ahead is key—especially when you're living with a bleeding disorder. Whether you're staying close to home or heading across the country, knowing how to manage your hemophilia care is essential.
Before you go, make sure that you:
Know the nearest HTCs and how to reach them
Bring copies of prescriptions and medication labels
Review your health insurance for coverage and travel limits
Always carry medical ID
Keep your medicine with you—never check it in luggage
Visit tsa.gov for travel rules around medications
Want more tips? Check out our travel and self-care guides to help you feel ready from day one.
Living on your own
Moving out—whether for college or your first apartment—is exciting, but it also comes with new responsibilities when you have a bleeding disorder. Taking charge of your health is a big part of independence.
Here’s how to stay on track:
Learn to self-infuse.
Being able to treat bleeds on your own helps you stay independent and act quickly.
Be involved in your care.
Talk with your care team at your HTC. Understanding your treatment empowers you to make informed decisions.
Treat early.
Don’t wait . Delaying treatment can lead to increased bleeding, which over time may lead to joint damage and long-term issues.
Eat well and stay active.
A balanced diet and regular exercise keep your body strong and your joints healthy.
Take care of your teeth.
Good dental hygiene can help prevent mouth bleeds—so brush, floss, and see your dentist regularly.
Learn to self-infuse.
Being able to treat bleeds on your own helps you stay independent and act quickly.
Be involved in your care.
Talk with your care team at your HTC. Understanding your treatment empowers you to make informed decisions.
Treat early.
Don’t wait . Delaying treatment can lead to increased bleeding, which over time may lead to joint damage and long-term issues.
Eat well and stay active.
A balanced diet and regular exercise keep your body strong and your joints healthy.
Take care of your teeth.
Good dental hygiene can help prevent mouth bleeds—so brush, floss, and see your dentist regularly.
Self-infusion: what to know
Learning to self-infuse is a key step toward independence. It gives you more freedom—whether you're traveling, heading to college, or spending time away from home—and helps you take control of your health.
Leandro lives with hemophilia A.
You can learn to self-infuse through:
- Hemophilia camps
- Your HTC care team, who can teach and support you
Self-infusion also shows you’re ready to take on more responsibility. Talk to your doctor or HTC about the best way to get started.
Navigating relationships
Whether you're dating or in a long-term relationship, having a bleeding disorder can add unique challenges. But you're not alone—and open, honest communication can help build stronger connections.
Carl lives with hemophilia A.
According to the HERO Study,
of people with hemophilia
said it had a negative impact on forming relationships with partners within the previous year.
The HERO study asked 675 adults with hemophilia from 10 countries to fill out a health survey including specific questions about the impact of hemophilia on forming close relationships. Because the study was based on people’s own reports at one point in time, it may not capture every experience or show cause and effect.
There’s no one-size-fits-all answer. Share when it feels right—once trust and connection are starting to build.
Start with the basics. Let them know bleeding disorders aren’t contagious and it’s just one part of who you are. Be ready to answer questions or share resources like the hemophilia dictionary if they want to learn more.
Yes— it's helpful to mention that there may be times when you need to cancel plans or take care of a medical issue unexpectedly. Being upfront helps set clear, respectful expectations.
Yes! A bleeding disorder doesn’t mean you have to miss out. You might just need to avoid a few high- risk activities or take extra precautions. Focus on experiences that you’ll both enjoy—and if you're unsure about one of the activities, talk to your care team.
As relationships grow, physical intimacy may become part of the conversation. It’s important to communicate openly with your partner about your needs, boundaries, and any concerns related to your bleeding disorder. Certain activities may carry a higher risk of bleeds, especially if you have joint or muscle issues—so talk to your care team if you have questions. Feeling safe and supported matters just as much as physical connection.
Work and your career
Whether you're just entering the workforce or already building your path, it's important to find a role where you can contribute meaningfully— and one that supports your health and rights as someone living with hemophilia.
Consider:
How physically demanding is the role?
Strenuous jobs—especially those involving heavy lifting, long hours on your feet, or frequent travel—can increase the risk of bleeds and make it harder to stay healthy.
Should I work for myself or a company?
If you rely on regular treatment or have high medical costs, prioritize jobs with strong health insurance. You can still follow your passions—just aim for a balance between what you love and what supports your lifestyle.
Big company or small one?
Larger companies often offer more robust benefits, and in some areas, they're legally required to. But don’t count out small businesses—many provide great healthcare, too. Always ask about benefits during interviews.
Leandro lives with hemophilia A.
For teens starting their first job:
Your first job is an exciting step—but it’s okay to think beyond the paycheck. Choose something that works with your treatment needs and energy levels. Whether it’s a part-time role or a summer gig, talk to your care team if you’re unsure what kind of work is best for your body.
Getting your own health insurance
At some point, you’ll need to choose your own health insurance plan. Understanding terms like PPO, HMO, co-pay, and out-of-pocket costs can help you make the right decisions to meet your needs—especially when it comes to covering factor and seeing the doctors you trust.
Actor portrayal
When reviewing a plan, ask:
What type of plan is it (HMO, PPO, EPO, POS, HDHP)?
What’s the monthly premium and co-pay?
Can I keep my current doctors?
Does it cover my treatment and factor?
Are there annual or lifetime caps?
What’s the out-of-pocket maximum?
When open enrollment comes around, your HTC team can help you review plans and make sure your health needs are fully covered.
Aging well with a bleeding disorder
As you get older, living with a bleeding disorder can bring new challenges—but also new opportunities to take control of your health. You may be managing joint damage, other health conditions, or changes in mobility.
Concerns you may face through the years:
Increased comorbidities
Aging individuals with bleeding disorders may experience age-related conditions such as cardiovascular disease, arthritis, and osteoporosis. Managing these alongside a bleeding disorder requires coordinated care.
Surgical considerations
Older adults may require surgeries (e.g., joint replacements) that necessitate careful hemostatic management to balance bleeding and thrombotic risks.
Medication management
The use of multiple medications is common in older adults, increasing the risk of drug interactions that can affect bleeding risk. Regular review of medications is essential.
Staying connected to your care team, maintaining a healthy lifestyle, and planning ahead for procedures or support needs can help you stay active, independent, and confident as you age.
Linda lives with hemophilia A.
For more detailed information on managing bleeding disorders in older adults, consider consulting resources such as the National Bleeding Disorders Foundation or speaking with a healthcare provider specializing in bleeding disorders.
Support at every stage
When you’re living with or caring for someone with a bleeding disorder, you may find yourself needing some help along the way. Find out more about the educational programs and support services created especially for you, offered through NovoCare®.
