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Managing hemophilia at different stages of life.

Managing hemophilia at different stages of life.

Here you can learn more about handling life’s big transitions, like living on your own, learning to self infuse, dating, going to college, and starting a career.

Brian, who lives with Factor 13 deficiency, is preparing to lift a barbell with weights
Brian, who lives with Factor 13 deficiency, is preparing to lift a barbell with weights
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People with hemophilia can’t live normal lives.

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With proper treatment, most people with hemophilia lead long, full, and productive lives.

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People living with hemophilia shouldn’t exercise or play sports.

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Exercise is important for people with hemophilia because it strengthens muscles, which helps protect joints, and reduces the risk of being overweight, which places added stress on joints.

Living on your own.

Going away to college or moving to your first apartment are exciting rites of passage. When you’re living with a bleeding disorder, they can also present challenges. Becoming more independent means that you’ll be handling a lot more things on your own—but you can do it!

Two keys on a keychain with a house silhouette

Start by taking responsibility for your health and wellness:


Learn to self-infuse – Being able to administer your own treatment means you can take care of bleeds yourself and be independent.


Participate in your treatment decisions – Get more involved with your doctors and nurses at hospitals and hemophilia treatment centers (HTCs). The more you understand your condition, the more you will understand treatment.


Treat bleeds early – Don’t hide bleeds or wait to treat them. Over time, delayed treatment can damage your joints and restrict your mobility.


Eat right and exercise – Commit to a nutritious diet and physical fitness program to keep your muscles strong, your joints flexible, and your body healthy.


Brush and floss regularly – A healthy mouth is less likely to have bleeding problems, so brush, floss, and visit your dentist.


Two keys on a keychain with a house silhouette
Full-length shot of Leandro, who lives with hemophilia A, as he crouches down to start a fire at an outdoor campsite
Full-length shot of Leandro, who lives with hemophilia A, as he crouches down to start a fire at an outdoor campsite

Self-Infusion: What you need to know.

One important thing you need to learn is self-infusion—how to infuse factor yourself. When you can self-infuse, you’ll have the opportunity to travel on your own, take trips with friends, or go away to college. Self-infusion also gives you more control over your own health care. Plus, it shows your parents that you’re responsible and ready for more independence.

Many people with hemophilia learn to self-infuse at camps sponsored by their local National Hemophilia Foundation (NHF) chapter. Others learn through their HTC. Talk to your doctor and the staff at your HTC about the best way for you learn to self-infuse.

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Dating Q&A

Dating Q&A

Unsure about how to tell someone you’re interested in that you have hemophilia? You’re not alone. Dating can be a little more challenging for people with bleeding disorders. In fact, the HERO Study, which asked people with hemophilia about the impact of the disease on their lives, found that 36% said hemophilia had a negative impact on forming close relationships.

As in any relationship, good communication with the person you’re dating can help things go more smoothly. Here are some general guidelines to follow.

Q: When do I tell the person I am dating about my hemophilia?
A: There is no single “right time” to tell the person you’re dating about your hemophilia. Intimacy is built slowly through trust and communication. Only you will know the best time to talk about it.

Q: What do I tell the person I am dating?
A: People may have preconceived notions about hemophilia. If the person you’re dating is concerned for your well being, reassure them by educating them about the disease. Let them know that hemophilia is not contagious and that you can live a normal life. Provide them with our Hemophilia Dictionary to help them learn more about your condition.

Q: What else is important to tell the person I am dating?
A: Because you have a chronic condition, it would be good to tell him or her that you may sometimes have a medical emergency and need to cancel plans at the last minute.

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HEMOPHILIA FACT

36% of people with hemophilia reported a negative impact of hemophilia on forming close relationships.

HEMOPHILIA FACT

36% of people with hemophilia reported a negative impact of hemophilia on forming close relationships.

Getting ready to go to college.

Getting ready to go to college.

It’s important to plan ahead for any major event—and even more so for people living with hemophilia. Whether you decide on a school far from home or right in your hometown, you should learn as much as possible about your bleeding disorder. You’ll want to learn how to self-infuse, where to get medical supplies, who to go to for treatment, and what to do in case of emergency.

Before you take off for school, take these steps:


Know the names and locations of the nearest HTCs


Take a copy of all prescriptions and labels that identify your medicine


Check your health insurance for travel restrictions


Bring medical ID in case of an emergency


Take medicine with you and keep it close by in case you need it


There may be special rules for traveling by air with your medicine—visit www.tsa.gov for more information


Starting your career.

Starting your career.

Whether you’re applying for your first job or well into your career, it’s important to feel you’re making a meaningful contribution. It’s also important to know that your profession and the company you work for supports your health and your rights as an individual with a bleeding disorder. If you’re in the process of looking for a job, think about your goals. Will this job support your health or could it possibly damage it? Start by asking yourself a few simple questions:

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How physically strenuous is the job I'm considering? Jobs that require more strenuous work may be more likely to cause bleeds. If you’re on your feet all day, lifting heavy objects, or constantly traveling, it may be harder to minimize bleeding related complications and maintain your health.

Should I work for myself or for a company? If you use a lot of factor or have other medical expenses, you’ll need to find a job that offers good health insurance. This doesn’t mean you can’t do what you love. The key is finding a balance between what you love to do and a job that offers good benefits and lifestyle support.

What’s better—a big company or a small one? Bigger companies may be more likely to offer comprehensive health coverage and benefits—and depending on where you live, large companies may be required to by law. But many small companies also provide health care benefits to their employees. Be sure to get all the details during the interview process.

Getting your own health insurance.

Getting your own health insurance.

At some point, you’ll be responsible for your own insurance. Knowing the meaning of terms like PPO and HMO, in-network and out-of-network, co-pay and out-of-pocket cost is important to ensure you know what to expect when you see your doctor or need factor.

Familiarize yourself with these aspects of potential health insurance plans:


What type of policy is it—health maintenance organizations or HMO, preferred provider organization or PPO, exclusive provider organizations or EPO, point-of-service or POS, high-deductible health plan or HDHP (which may be linked to health savings account or HSA)—or something else?


What are the premiums?


What are the co-pays?


Does it allow you to keep your current doctors?


Does it cover factor products?


Does it have lifetime or annual spending caps that might require you to pay more?


Does it have out-of-pocket limits?


HEMOPHILIA FACT

Your HTC staff may be able to help you review insurance plans, help you understand what is being offered, and what additional information you need to be certain your health care needs are sufficiently covered.

HEMOPHILIA FACT

Your HTC staff may be able to help you review insurance plans, help you understand what is being offered, and what additional information you need to be certain your health care needs are sufficiently covered.

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 NovoSecure™.

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 NovoSecure™.

Get organized.

Stay organized and informed with tracking and educational tools.

Get to know us.

Novo Nordisk is committed to the bleeding disorders community.

Get organized.

Stay organized and informed with tracking and educational tools.


Get to know us.

Novo Nordisk is committed to the bleeding disorders community.