Warm, sunny days entice us all to get outside, be more active, and travel. While these pursuits are good for our physical and mental health, they can also present challenges for people with bleeding disorders such as hemophilia and von Willebrand disease (VWD).
By doing a little extra planning and taking precautions, however, it’s possible to enjoy the season.
“Have a great summer. Do the fun stuff,” says Tami Bullock, RN-BC, BSN, a nurse coordinator at the Iowa Hemophilia and Thrombosis Center in Iowa City. “But be prepared, and stay safe.”
Here’s what you need to keep in mind.
More Activity Can Lead to More Injuries
The biggest summer risk isn’t necessarily the heat itself. It’s the increase in activity.
“We see more of the outdoor types of injuries like scrapes and bruises in the summer,” Bullock says. “People are a lot more active, and they tend to get hurt more.”
That’s not to say people with bleeding disorders should avoid outdoor recreation. Quite the opposite.
“In summer, they’re going biking, hiking, and running — all the things we want them to do,” Bullock says.
Physical activity helps improve joint motion, muscular strength, bone health, spontaneous joint bleed risk, mood, and self-esteem, among many other benefits, according to research shared in the National Bleeding Disorders Foundation publication “Playing It Safe: Bleeding Disorders, Sports and Exercise.”
The key is preparation. Continue to follow the same safety practices you use year-round, including wearing appropriate protective gear and following recommendations from your care team about activities and injury prevention. This includes wearing bug spray and sunscreen to minimize skin irritation.
Heat and Dehydration Can Affect Treatment
Another hazard of summer heat is the effect it has on bleeding disorder treatments.
Bullock says that “dehydration doesn’t really increase bleeding risk,” though it can make infusions more difficult for some people.
“If somebody is on prophylaxis with an IV factor replacement product, and they’re dehydrated, it could complicate their venous access,” she says. “They might have more issues with veins when they’re infusing.” Keeping a refillable bottle of drinking water on hand throughout the day is the easiest and most effective way to reduce those risks.
Summer heat also creates additional considerations around DDAVP (desmopressin), a synthetic hormone medication that’s used before procedures and after bleeding episodes.
“For people who use DDAVP, we have to restrict their fluids,” she says. “Sometimes that drug alone can cause headaches and flushing and similar things that people experience when they are overheated.”
Treatment Plans Can Be Disrupted by Summer Schedules
People with bleeding disorders depend on routines to help with adherence, but summer schedules loaded with camp, youth programs, vacations, and day trips tend to upend all of that.
“One concern is missed doses or traveling somewhere and not having access to your medication,” Bullock says.
She encourages people to think ahead about how their summer plans align with their treatment schedule. Your hemophilia treatment center (HTC) may be able to suggest solutions.
For example, Bullock says: “If somebody normally does their prophylaxis on Friday night, but they know they have an all-day baseball tournament that starts Saturday morning, we might say, ‘Just hold off and do that Saturday morning before your tournament. We want your factor level the highest when you’re the most active.’”
She notes that people who don’t need heavily structured treatment routines should still be wary of schedule disruptions.
“People who use nonfactor therapies are not getting bleeds, so they have this dose that sits in their fridge and it’s kind of out of sight, out of mind,” Bullock explains. “And then they leave to go to another state, and they have no access to factor when they need it.”