Living right includes involving your nearest Hemophilia Treatment Center (HTC). There are 141 HTC’s located throughout the US. Find yours here. HTC’s are federally funded, comprehensive care centers designed to keep you healthy1. Use them. Get to know them. They are there for you.
Balance is best
Watching your diet is key. Extra weight, means extra stress on your joints. Don’t stress, just keep junk food to a minimum. There’s no magic food either. For example, there’s no evidence that foods high in Vitamin K prevent bleeds2.
Check out what the USDA says at MyPlate. It’s an excellent reference for finding a diet based on age and height3.
Let’s get physical
Staying active keeps muscles flexible, joints strong and your weight where it should be. Use your head, though.
With mild hemophilia, you can participate in a variety of activities. With severe hemophilia, stick to things like swimming, biking (with a helmet), walking and golf. Severe hemophiliacs should not play contact sports or activities that could lead to potential bleed-forming injuries4. So steer clear of football, hockey, wrestling and jousting. Just saying.
For more on playing it safe, check out this from the National Hemophilia Federation4.
When you travel, always pack deodorant and clean underwear. Also, if you have hemophilia A, you have to travel with proper treatment materials and understand the most up-to-date rules around having prescriptions like factor on a plane. Helpful hint: keep it in the prescription container5. Airport security usually has a thing about unknown substances, so keep a doctor's note or prescription with you, too.
It’s also a good idea to bring contact information and travel letters. Decide in advance where to go for help in case of an emergency. Before you go, find the nearest emergency room and HTC5. If you don’t have a Medic Alert ID you might want to get one6.
Here’s a good tip for travel or every day: put the code word ICE (in case of emergency) next to your loved ones, your doctor and your HTC’s contact info in your cell phone7. Emergency workers know to look for that.
Visiting the ER
If you have an injury or feel the effects of a bleed, treat first then go to the emergency room. Speaking of which, here are some times when you should definitely go to the ER9:
A head, neck, or abdominal bleed (even without prior injury)
An uncontrollable nose bleed (more than 30 minutes)
Blood in the stool or vomiting blood A lack of sensation or feeling in an arm or leg
A lack of sensation or feeling in an arm or leg
Any kind of unusual bleeding, such as in the groin
Had an accident with trauma
Uncontrollable vaginal bleeding
A suspected bleed and are not on home infusion
Home infusion but you can’t access the vein
Now that you know WHEN to go, here’s WHAT to do before and during your visit.
Advocate for yourself
Advocating for yourself in the ER is very important. If possible, check out the ER nearest your home or the one you’re most likely to go to during an emergency beforehand9.
Before any emergency ER trip, call your HTC while you’re on the way. They can help smooth out the process once you arrive. The ER staff may not know all the ins and outs of hemophilia, particularly at small hospitals9.
When you get there, let them know you have hemophilia. Don’t hide it. You need to be seen quickly, but know that ER’s must prioritize patients based on the severity of the situation. So advocate respectfully. And be prepared to tell them things like when you last infused9.
Know before you go
Some ERs will not allow you to bring factor in. Therefore, it is important that you are familiar with the procedures in your local ER9. Knowledge is power.
Sex and Relationships
When you start dating someone, you need to figure when to tell her or him about your hemophilia. Obviously that’s up to you. But don’t wait too long. You don’t want to wait until you have a bleed or an injury at the absolute wrong time8. Be safe, because it’s your life and people care about you. Our friends over at frankly.net have a lot of discussions going on about sex and relationships and whatnot, you should check them out. Tell them we sent you. Read more
1 National Hemophilia Foundation. Comprehensive medical care: hemophilia treatment centers. http://www.hemophilia.org/Researchers-Healthcare-Providers/Comprehensive-Medical-Care-Hemophilia-Treatment-Centers. Accessed June 14, 2016.
2 National Hemophilia Foundation. Caring for Your Child With Hemophilia. 2001.
3 US Department of Agriculture. https://www.choosemyplate.gov/. Accessed June 14, 2016.
4 National Hemophilia Foundation. Playing it Safe. https://www.hemophilia.org/sites/default/files/document/files/Playing-It-Safe.pdf. Accessed June 15, 2016.
5 Beckley ET. Traveling with medication. HemAware. June 2010. http://www.hemaware.org/story/traveling-medication. Accessed June 14, 2016.
6 MedicAlert® Foundation. http://www.medicalert.org. Accessed June 14, 2016.
7 Classbrain.com. ICE your cell phone. Accessed June 14, 2016.
9 World Federation of Hemophilia. Emergency Care Issues in Hemophilia. November 2007. http://www1.wfh.org/publication/files/pdf-1196.pdf. Accessed June 14, 2016.