Managing Hemophilia The Transition To Adulthood: Hemophilia And College
The moment you receive a letter from a college with glossy pictures of smiling students, it's clear that you're starting a major transition. However, if you or a loved one has hemophilia, the prospect of going to college brings with it additional responsibilities and opportunities. There is no need to go it alone. We have compiled some resources and tips to help along the way.
Choosing the Right School
In his 8 Questions interview Joe Moleski stressed the importance of students choosing a school that is right for them. A school's name and reputation only matter if you can thrive as a student. Here are a few tips to help you along the way.
- Be proactive: Reach out to admissions offices and ask questions. If admissions officers can’t answer those questions, ask them who can. Your questions about academics, on-campus resources, residence options, and financial assistance may require more than one contact. Get answers.
- Use your HTC: Many HTCs have career counselors or social workers who can help you guide through the waters of transition from high school to college. Use our HTC Finder to find out about resources close to your prospective campus.
- Reach out to graduates: A key part of any college education is building a network. Find out about the experiences of alumni, and get a glimpse of your possible future. Your prospective school’s alumni office should be able to put you into contact with someone who can answer your questions.
- Talk with potential teachers: Make sure your learning style aligns with their teaching style, find out what academic resources they offer, and their policies on everything from attendance to using assistants as lecturers.
Take Time to Visit
One of the most exciting times in selecting your college will come when you first step foot on campus. In addition to offering you a sense of what your experience at a school may be, the college visit offers a chance to get questions answered face-to-face, gauge just how far you will be from home, and see the types of resources a school can offer. The College Board (yes, the SAT people) offers a website on college visits which contains information about planning visits and making the most of your time on campus.
Where to Live
A major decision you will make is whether to commute to school or to move away from home and into a college residence hall or apartment. If you do decide to move away from home, there are several considerations. Make sure that you are comfortable with your roommates and that they understand many of the ins-and-outs of how you manage your hemophilia. Consider letting them know where you keep your factor and other supplies. Prep them on what they may be asked to do in an emergency situation. Get to know the people at your campus’s health clinic. Also, if you will be living on campus, make sure to know the rules about:
- Refrigerators
- Storing medicine, needles, and other medical supplies
- Disposing medical waste and sharps
Connect with residence life officials early in your interactions with school. They should be able to answer all questions from dining options, to the accessibility of rooms, to the type of fitness equipment that is available to students.
Finding Money
For many students, paying for college presents a major challenge. While loans will likely be a part of many students’ plans, it is also important to offset future debt with money that does not have to be paid back. The National Hemophilia Foundation offers a list of 27 scholarships including the Education Advantage program available to students with bleeding disorders. Another resource for scholarships can be found at Fastweb.com. When applying for scholarships it is important to:
- Read all of the eligibility information
- Fully complete every application
- Have a friend, someone at your school, or someone in your family proofread applications
- If you will be applying for several scholarships, set up a calendar with deadlines. Keep track of when everything needs to be sent out
In addition to securing scholarships, many students will also need to look into federal student aid. The government offers several types of aid to students, including both loan and grant programs. To check out what programs you may be eligible for visit the US Department of Education's Student Aid on the Web.
Health Insurance Questions
This is an important time for every family to review their health insurance and to understand their options. Check out your factor manufacturer's assistance program, like Baxter's CARE Program, and contact your insurer to make sure you understand what going to college might mean for your coverage. With this in mind, we spoke with Nancy Hatcher, MSW, Children’s Hospital Central California about what health insurance questions may come up. She offered this list, which you can click and print out.
For Caretakers
As the parent or caretaker of a child with a bleeding disorder, you have likely heard a lot about fostering a sense of independence in your child. Mom Morgan Major talks about this on our Expert Corner. The transition to college life will bring independence into sharp focus. Here are a few tips to assist you in this journey.
- Be an Advisor, not a Decider: You will likely have a huge influence on your child’s decision, but remember that it is their decision. Help them to focus on the goal of getting the best education they can, making sound financial decisions, and doing all they can to effectively manage their hemophilia.
- Let Go, But Be Available: Huh? This is the kind of tip that only a parent can understand. There will be times when your college student needs your help, but there will also be times they will need to be left alone to grow. It will be okay to go days without talking, and don’t get too upset if you are un-friended on Facebook. Just make sure you get that Skype password memorized.
- Work Together: Include yourself in the process from the start. If you have concerns, have your student include them in their list of questions for college officials. Use your position to make sure your child has a MedicAlert® bracelet, emergency contact in their cell phone, and has found a place to have their factor shipped.
- Take A Moment: Enjoy the experience of seeing your child reach for his or her goals. It is OK to acknowledge your work well done.
Talking about College
For more information about the transition from high school to college, check out the Association on Higher Education and Disability's Resources for Parents and Students who are looking at and attending colleges and universities. Print up this PDF to use as a discussion guide with your parents, admissions officials, and high school guidance counselors as each of the topics covered will be an important part of your transition.
