College student with hemophilia

Off to College with a Bleeding Disorder

Advice for teens and their parents during one of life’s major transitions
Author: Phyllis McIntosh

Rachel Miller, 21, who has von Willebrand disease, attended two years of community college and lived at home before enrolling at Emerson College in Boston, 3,000 miles away from her family in Washington state. Los Angeles native Arther Scott, 20, who has severe hemophilia A, made the leap right out of high school, enrolling at Florida Memorial University, a historically African-American school in Miami. Alex Ell, 19, who has severe hemophilia B, is content as a freshman at the University of Portland in his Oregon hometown. He has moved out of his parents’ house and now lives with a cousin.

All are thriving, and all are proof that a bleeding disorder is no longer a barrier to higher education or to enjoyment of the college experience. Among the more than 4,000 colleges and universities in the United States, there is a good fit for almost any student with a bleeding disorder.

[Steps for Living: Life on Campus, Choosing a School and Career Search]

College is a challenge for all students, regardless of whether they have a health problem. All freshmen struggle with newfound freedoms, decision-making, time and money management, and other responsibilities like doing laundry and planning meals—some or all of which were likely done for them at home, says Jim Kessler, director of the Department of Disability Services at the University of North Carolina at Chapel Hill.

For those with a chronic medical condition, adjustments may be even greater. Students, especially those with overprotective parents, may have difficulty handling their newfound freedom. Besides dealing with the demands of classes, homework, laundry, meals and social life, teens with bleeding disorders must adhere to a treatment regimen away from their parents’ watchful eye, determine whether and how to tell new friends about their condition, and guard against behaviors that could lead to injury—from a pick-up game of football or Frisbee on the quad to drinking alcohol.

Many believe preparation is key to college success. Bleeding disorders experts, parents and teens alike agree that it is critical for teens to assume responsibility for their own healthcare during their high school years. Most hemophilia treatment centers (HTCs) offer a wealth of education, counseling and referral services for teens. And colleges go to great lengths to ease the transition and make accommodations for those who need them.

Start Early

The summer before college is too late to start managing your healthcare. “We encourage self-infusion at least by the beginning of senior year,” says Lisa Maiale-Howell­, a social worker at the Hemophilia Program at The Children’s Hospital of Philadelphia. “It’s not just about learning the phlebotomy skill. It requires diligence and setting aside the time. When you go to college, schedules get turned on end, and the structure you had at home isn’t there. We want [teens] to have the skills fully incorporated into their lifestyle before they start college.”

Before college, you also should know where and how to order your factor and how to keep your own treatment log. Understand what insurance coverage you have and how to submit claims, schedule your own doctor appointments, and meet privately with practitioners at the clinic. “If you have a bleed at college and have to go somewhere for treatment, you won’t have Mom or Dad there to explain things,” says Maiale-Howell. “You need to know how to ask and answer questions on your own.”

Take Advantage of HTC Services

Social workers and career counselors are there to help, and some HTCs offer comprehensive programs to prepare you for life away from home. Staff at centers in the Mid-Atlantic region, for example, give pre-teens and teens ages 12 to 15 years old a book that explains the basic concepts of bleeding disorders. Then they review the book with them by phone and administer a survey to make sure they understand their specific bleeding disorder. For 16- to 18-year-olds, a second survey assesses their knowledge of insurance coverage, how to order factor and what to do if they have an acute bleed away from home.

The Indiana Hemophilia & Thrombosis Center (IHTC) has launched a Career Education and Opportunities program that it plans to expand nationally with support from the pharmaceutical company Baxter. Starting at age 14, teens receive personality and career testing, information about various careers, and practice making decisions they will face as young adults purchasing houses, cars, food and furniture. “Our goal is to tell kids they’ve got to go on to some type of post-secondary education,” says Don Molter, IHTC career counselor.

Choose the Right School

The local community college may be the perfect choice for a teen not quite ready to leave the nest and is an economical way to accumulate the first two years’ of required credits.

After going that route for her freshman and sophomore years, Miller transferred to Emerson largely because it is one of the few schools that offers a major in political communication. Having relatives in the Boston area and the ability to return to the HTC she attended when her family lived in Boston 10 years ago made the choice even more attractive.

For Scott in Miami, the only nearby relative is a grandmother several hours away in Sarasota. Nevertheless, he and his mother felt strongly that going to a distant school was key to his independence. His mother, Karen Wyatt-Coleman, admits she coddled him. “I figured I was doing him an injustice,” she says. “He needed to grow up.”

[Steps for Living: Building Independence]

Electing to go to college in his hometown was an easy decision for Ell, who says, “I like Portland, and I feel comfortable here. It has nothing to do with hemophilia.”

Whatever college you aspire to, you might want to reveal your bleeding disorder on the application, advises UNC’s Kessler. “No school may ask if you have a disability or medical condition that would affect your ability to study,” he says. “But you may volunteer to tell us about situations that may have impacted your high school experience.” Talking about your bleeding ­disorder could be an interesting topic for an admissions essay.

Remember Your Health Comes First

Once you get to college, the newfound freedom may feel thrilling. But as much as you may want to blend into the crowd, you cannot ignore your health condition—it requires vigilance. “Some young people don’t want their friends to know they have a disability, so they don’t take care of themselves when they’re away,” says Elizabeth Fung, PhD, a clinical social worker in the Hemophilia and Thrombophilia Program at Children’s Memorial Hospital in Chicago. “If they are involved in sports, they may do what may not be best for their joints. Or, they may stay out late when they should have gotten back to give themselves a treatment.”

It is vitally important that you wear your medical alert bracelet or neck chain. It may elicit questions, but it can also provide an easy way to broach the subject of your bleeding disorder with friends. For your own safety, it’s wise to inform the campus health clinic, dorm reps and lab teachers about your bleeding disorder and, in some cases, of your emergency treatment plan. You may want a friend or residential adviser to have access to your dorm room just in case you need them to bring your factor to the emergency room, if an emergency arises.

[Steps for Living: When To Go To the Emergency Room]

Have a Game Plan

Create an emergency treatment plan before you need it. Know beforehand what you will need to do if you have a serious bleed. Find out where the nearest hospital is and how to get there. Keep a card in your wallet with your doctor’s name, address and phone number. Know what your insurance covers and whom to call for referral or approval, if necessary. Keep emergency contact names and numbers in your cell phone and don’t forget to “ICE” it—list someone who is your “in case of emergency” contact.

Maintain a Support System

Stay in touch with friends from camp or leadership programs. A local chapter or HTC near your school may be willing to find out whether there is another student with a bleeding disorder on campus who might want to meet you.

Your home HTC can—and should—continue to be a resource if you have questions. Many HTCs recommend keeping the home-based HTC as your primary treatment center while you’re in college and before transferring to an adult center when you graduate. “We see students over Christmas break, spring break and in the summer before they go off to college—enough times that we feel we can still supervise their care,” says Maiale-Howell.

On campus, an office of disability services may be able to help you make up a test you missed for health reasons, arrange to take a class online if you have mobility issues, or schedule a lighter course load. Keep in mind, though, that many insurance companies require you to maintain full-time status in order to continue coverage.

Telling Your Friends

College roommates sitting in dorm roomIt can be difficult to share information about your bleeding disorder with people you’ve just met, especially if you are private by nature. But keeping your condition a secret can be a burden or lead to serious misunderstandings. Infusing could be mistaken for illegal drug use.

“In my experience, once you share something so important in your life, it’s a big load off your shoulders,” says Ell. Miller agrees. She says, “If I am light-hearted about it and approach it in the right way, people will react in the same way, and it’s not a big deal.”

Enjoy Yourself

Make the most of your college years. Get involved with campus life. Sign up for clubs and sports you can safely play. Such activities are great stress relievers, say students, and help take your mind off your chronic medical condition.

LA native Scott sums it up well: “Prepare yourself ahead of time, and most of all, don’t be afraid.”

Offer Encouragement

Get on board in the early school years, advises Don Molter, a career counselor in Indiana. Make sure your child develops good study skills. Encourage your son or daughter to start thinking about different careers and the education needed. Don’t let the bleeding disorder be an excuse for poor school performance. See Moms Offer Advice.

Get Kids Involved

“Send kids to camp, so they see others in the same situation out there having a ball,” Molter urges. “Get them involved in a teen leadership program, which gives teens a chance to get together throughout the year and to participate in career-related activities.”

Through such contacts, teens become more comfortable with their bleeding disorder. “I went to camp for many years and was on the leadership task force for NHF,” says Rachel Miller at Emerson.  “I had a lot of friends with hemophilia, and I could talk about my illness with them. It helped me see that it doesn’t have to be this terrible thing, and if I can deal with it positively, then other people will react positively.”

Pave the Way for Independence

Encourage high schoolers to gradually take responsibility for their healthcare under your supervision. Remember that when your child turns 18, privacy laws prevent the HTC, campus health department or other medical staff from revealing medical information to you without your child’s permission. “Most kids are comfortable signing a release so parents can still be in the loop, but it’s wise to talk to your teen about that,” says Lisa Maiale-Howell, a social worker in Philadelphia.

college student and professor talking as walk up stairsWhen your teen is ready to visit and apply to colleges, your HTC may be able to put you in touch with another family who has just gone through the process. Check college Web sites or the Association on Higher Education and Disability, to see if the schools your teen likes have an Office of Disability Services. (Most larger ones do.) An excellent contact point before and certainly after acceptance, this office can help with such things as a dorm assignment closer to classrooms, a private room if warranted and notifying faculty that the student has a condition that might require special considerations.

Keep an Open Mind

“Don’t tell your kid to go to a school close by just because you’re worried about him having a problem,” says Miller. “Ultimately, you have to decide where they’re going to get the best education.”

Social worker Elizabeth Fung agrees. “Parents have a lot of influence on a child’s college choice and may be very outspoken about wanting their kids to stay nearby,” she says. “We tell them that with a cell phone you have a lot of connection, and the farther away they go the more they will learn about life.”

On the other hand, for some children it is important to avoid pushing them out of the nest too soon. Some young people may be more comfortable with a gradual transition: going to community college and living at home, then moving in with friends and, finally, transferring to a four-year college.

Let Go—But Not Entirely

Do what you can to smooth the transition. When you take your teen to college, buy a dorm-size refrigerator and containers for supplies. Make sure your child has a medical alert bracelet, emergency wallet card and all vital contact information. Visit or at least locate the nearest hospital.

“Then back off and let the kid be a college student,” Molter advises. “Let him experience homesickness and make it clear you want him to stay there and get acclimated. If he has a bleed, you’re not going to come there and take him for his CAT scan or whatever.”

But don’t check out completely. “It’s not wrong to check on their hemophilia status after they get to school,” says Maiale-Howell. “Stay in touch by phone or e-mail to make sure they’re doing their prophylaxis.”

And be available, within reason. Karen Wyatt-Coleman maintains an emergency travel fund in case her son in Miami should really need her. Miller says that at first she found it difficult to rely on her own judgment about which things needed to be checked out and called her mother “at all hours of the night” to seek her advice.

The bottom line is that with proper preparation by teens and parents, most young people with bleeding disorders do just fine in college. “We’ve made such progress in hemophilia care that few things are going to get in their way,” says Maiale-Howell. “It’s really wonderful to see them going off and doing everything they’ve always dreamed of. The world is their stage.”

NHF’s Medical and Scientific Advisory Council (MASAC) developed a list of transition guidelines that may serve as “talking points” for parents and teens 16 to 18 years old. It covers such topics as social support, health and lifestyles, educational/vocational/financial planning, self-advocacy and self-esteem, sexual health and independent healthcare behaviors. For a complete list of guidelines, read MASAC Document #147: “Transition Guidelines for People with Bleeding Disorders.” You can find MASAC documents online or you can contact HANDI, NHF’s information resource center: at 800.42.HANDI.