Here's How We See It

Five Things I Hate About My Bleeding Disorder (and One Thing I Sort of Really Like)

One of the worst things about my bleeding disorder is that during “that time of the month,” I have the worst bleeds ever. Sometimes my period is so bad that I can’t do much of anything, including going to school or work or hanging out with my friends. I’ve missed exams, project deadlines and friends’ birthdays because of heavy bleeding. While not all women with bleeding disorders have extremely heavy menstrual cycles, it is a problem almost all of us have at some point in our lives. It even becomes a way for us to help other women realize there may be a problem and that they should get tested to find out if they have a bleeding disorder.

My second-largest complaint about my bleeding disorder is what I call the “paper cut myth.” Although people may know a little about bleeding disorders, it for some reason shocks...

1. Myth: I’m gonna tell you on the first date.

Although, obviously, anyone I’m dating should know about my bleeding disorder, it can be an awkward subject to breach. I’m going to wait until I feel comfortable. It is an important part of me, but not something I need to divulge to every stranger who buys me dinner.

2. Myth: I’m going to bleed to death from a paper cut.

People with hemophilia do not have to worry too much about simple scrapes and bruises. Despite the fact that I may have a bad ankle or bum knee, or my bones might creak louder than is age-appropriate, I’m generally healthy. I take medicine a couple times a week, but mostly there’s not much to worry about, besides occasional bruises and bleeds that may cramp my style. And, I don’t bruise that easily.

3. Myth: We can’t talk about it.

I’ve lived with hemophilia my entire life. I’ve talked to friends, teachers, doctors, even senators about my disorder. I...

Everyone with a bleeding disorder can stay in shape. The first thing you need to do is set a goal. Getting into a healthy routine is hard, but it’s even harder if you don’t really make it a priority.

The second thing may seem like a no-brainer for someone with a bleeding disorder, but infusing before you work out or stretch any muscles is really important, especially when you’re starting out. When you lift weights or use resistance bands, you are tearing muscle that has to reform. And working out and being fit is supposed to protect your joints, not make them worse. So start slow, stretch each time, and make sure your body is ready.

Third, choose what is feasible for you. I started to exercise on the...

1. Myth: We can’t have children.

Women with bleeding disorders can still have your children. However, there are some important precautions to be taken, so women with a known bleeding disorder or who are carriers of a bleeding disorder should consult with a high-risk pregnancy specialist and their hemophilia treatment center (HTC) team before becoming pregnant. If you are concerned about whether your child will share your partner’s bleeding disorder, her doctors can discuss this with you. But kids are not out of the question for the fine women of the bleeding disorders community!

2. Myth: We’re fragile.

It might look like we have been beaten, but we probably don’t remember how we got that random bruise. Bleeding disorders and...

One: Making Amazing Friends.

Once you become a member of the National Hemophilia Foundation’s National Youth Leadership Institute (NYLI), you are introduced to 20 or so amazing new friends who share the unique bond of being in the bleeding disorders community. NYLI may be a diverse group filled with edgy vegetarians, die-hard adventurers, preppy intellectuals, glittery characters and extroverts from all over America. In the end, you share a connection and a mission to gain leadership skills and reach out to the community, as well as countless laughs, debates, meals and some pretty hilarious inside jokes.

Two: Seeing the World

One privilege of being in NYLI is that you’ll travel all over the country. NYLI leads youth retreats in Texas, participates in yearly advocacy initiatives in Washington, DC, visits rural campsites for Team...

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