Member Tips

The tips below were submitted by members of All About Bleeding — real people dealing with issues associated with bleeding disorders. CSL Behring does not necessarily endorse, and is not responsible for, the content of the tips. If you have questions about the efficacy or practicality of any of the tips, please consult your healthcare professional before making any changes to your lifestyle or treatment regimen.

• Swabbing our daughter's nose using a Q-tip dipped in olive oil each night and running the humidifier in her room has kept her nosebleeds from recurring so frequently. She has type 3 VWD, severe.
• My daughter was not allowed to play dodge ball anymore after she entered 6th grade. With her having type 3 VWD, this age group was just getting too rough for her. She is now the official referee, complete with chrome whistle. Now the kids know, don't mess with her, she will call you out no matter what. Her whistle is law now!
• As teenagers, my girls were very self-conscious of their medical alerts. One didn't want to wear hers at all, and took it with her but didn't wear it (I freaked out!). I went to a local jewelry store and got pretty medical alert ankle bracelets from a catalog that didn't look so clunky but still got all their VWD info on it. It has really helped!
• With two little girls with VWD, I was often frustrated with mouth and nose bleeds. Popsicles were the trick to get ice cold to the site. It also worked great for when they lost their teeth and I always kept a box at school. Soon the other kids wanted popsicles when they had a tooth fall out, which made my girls feel better about their VWD!
• A gentle dental floss really cuts down on gum bleeds.
• For summer activities, freeze a drink for each member of the family like water, juice, or tea. You then have a nice cold drink that slowly melts in the sun, an ice cube that water can be added to, and best of all you have ice available for those inevitable boo-boos that seem to happen far away from any treatment.
• Wear a medical identification bracelet or necklace with basic information: your diagnosis, treatment and product information. You can carry the name and telephone number of your doctor or hemophilia treatment center.
• Are you suffering from nosebleeds? Your nosebleeds may not be caused by von Willebrand disease, yet the disorder may make it more difficult to stop the nosebleed. Work to prevent nosebleeds by keeping the lining of your nostrils moist.
• If you or your child is diagnosed with von Willebrand disease, it's important to educate others in your family about the disorder. It will help them support you and your child, and may spur some family members to be tested for the disorder.
• When a woman with a bleeding disorder shaves her legs or underarms, a little nick may leave her oozing blood all day. Opt for electric or safety razors, or investigate whether a chemical powder for removing or destroying hair growth might work. As always, consult with your healthcare provider on this issue.
• Ouch! You may be able to stop a bruise by quickly molding an inexpensive bag of frozen food around the body part. Then, refreeze the bag of food for future use (Just label the bag "DON'T EAT.")
• Von Willebrand disease can be diagnosed at any time in a person's life. Learn all you can about your disorder and help teach your friends and family.
• Use care when taking pain medication. Some medicines can further aggravate your bleeding disorder. Avoid aspirin and all aspirin-containing products. If you have a question about any particular drug, check with your treatment center or doctor.
• Common sense is an important key to managing von Willebrand disease. Choose exercise activities carefully, and if one causes you to bleed, modify or omit it from your routine. Consult with the physical therapist at your hemophilia treatment center on the sports and exercises that are best for you.
• Knowing the type of von Willebrand disease you have determines its treatment. To identify and learn more about your disorder type, contact your physician or the nearest hemophilia treatment center.
• Heavy or prolonged bleeding during menstruation is the most common gynecological problem for women with von Willebrand disease. If your period interferes with your daily activities, consult with your treatment center's nurse practitioner or doctor about treatment options
• Are your periods heavy? Do they last longer than a week? AllAboutBleeding.com's journal helps to keep a log of your menstrual cycle, including how many pads or tampons you use each day. Print out the journal report and take it with you when you visit the hemophilia treatment center.
• Have you had your comprehensive care check-up yet? It's important to visit your Hemophilia Treatment Center regularly. You may wish to schedule your appointment at the same time each year, perhaps during your birth month or some other easily remembered date.
• People with von Willebrand disease may experience bleeding during or after dental procedures. Always contact your bleeding disorder treatment team prior to dental treatments such as fillings, extractions, block anesthesia and root canals. They will work with your dentist to determine what medications you should receive prior to and after the procedure.
• Planning to take a spin on your bicycle? It's good exercise! Just don't forget to wear a helmet and other protective gear. It's important to try to prevent head and other injuries if you should fall.
• Healthy, well-developed muscles will best support your joints. If you currently are not physically active, contact the physical therapist at your treatment center to see if you can design a plan that can help you get moving.
• Considering a job change? If you've been covered by a group health insurance policy, you'll want to understand COBRA, a Federal act which can mean 18 months of continued health insurance coverage after leaving one job and before getting another job. There is a lot to understand about COBRA and its rules, so get information about it from the social worker at your treatment center before making a job change decision.
• Keep those gums and teeth healthy by using the right toothbrush. Choose one with soft, rounded bristles, and replace it with a new one at least every three months.
• If you are a woman with a bleeding disorder, consider reaching out and connecting with other women with bleeding disorders. Your common experiences may lead to a wonderful support network.