Going to College with Sickle Cell

It’s that time of year everyone—Back to School! For most students, this is a time of excitement and joy, as they get to meet up with their old school pals, leave home and embark on a whole new adventure. However for those with sickle cell, this is a time of trepidation and worry.

“Will my child fall sick in school this year?” Parents wonder. “Will I be able to make it through the whole semester without flunking out due to poor attendance?” Students worry.  There are so many more concerns and questions flying through our minds as we head back to school. Those on the Sickle Cell Warriors Facebook page got together to answer the following question, “How do you manage sickle cell when in school?.”

For college bound students, this is often a worrisome time for all involved. Whether you are going away to college or attending classes while living from home, your life is about to change, and for once, your parents might not be around to be your advocate. You must learn to advocate for yourself.

Step 1: Know your history: Yesterday, your parents knew everything about your history with sickle cell. Well, you are 18 and an ‘adult’ now, so it’s time to step into the role. Learn your medications, allergies, surgeries and medical history. Know what your triggers of a crisis are and how to avoid them. The best way to get this is by talking to your mom and your dad. Also, talk alone with your pediatrician. Try to get as much information as you can about your own medical history. Be sure to ask for documentation from your doctor, something you can refer to in case your memory fails you. Also ask for a letter that will qualify you for the 504 Plan of your school.

Step 2: Sign up for the 504 Plan at your school: This should be done during registration. The 504 Plan is a law that states that all federally funded schools must make reasonable accommodations for student’s with disabilities. In this case, sickle cell, a chronic medical condition, falls under the disability category. The 504 Plan students are usually overseen by the Health Clinic of your school. You should have a doctor’s note that qualifies you for the plan. Some schools’ might assign you a counselor that checks up on all 504 plan students. However, some school’s might not have established policies in place. If this is the case, you need to do step 3

Step 3: Use your voice. Learn your rights so that you can ask for what you need to succeed in school. My college dorm was in the South, and my suite mates had the A/C blasting 24-7. This triggered many of my crisis before I found my voice. Don’t let silence kill you. Ask politely for help in whatever area you need, whether it’s with your dorm room, school work or issues with your teachers.

My 504 Plan adviser sent out a letter to all my teachers every semester explaining my needs and that I might miss some classes. I was able to do homework in the hospital, and take tests several weeks after others had taken them, if I had a medical crisis. But I wouldn’t have been able to graduate with my peers, if I hadn’t used my voice and asked for these exceptions. Some teachers might give you stress and not want to help you out, but keep advocating for yourself and involve the Dean of Academic Affairs if you must. Don’t back down until you have the support you need—remember, the squeaky wheel gets the most oil.

Tell your closest friends about sickle cell. They are the ones that will look out for you and watch your back when you are down, so it’s important for them to know what is going on with you.

Step 4: Study hard and don’t be a slacker: This might be a hard step as a college freshman, especially when you see your mates drinking and partying the night away. But it’s important that you don’t let your grades slip when you are healthy, because you are going to need that extra cushion should you miss school because you are sick. I once missed half a semester due to illness, and the only way I was able to stay in school and graduate with a 3.0 GPA was because I had started out the school year strong. Try to stay ahead with your assignments. This way, if you do fall sick, you won’t have that much catching up to do.

Step 5: Make good friends: Not everyone is going to be a solid friend, so you might have a few disappointments along the way. However, all you need are a couple of great friends to see you through school. When I was in college, my class mates were the ones that got me through. They would record lectures and bring it to my hospital room, and take notes for me to catch up on. They would help me study for the late test I was taking, and explained things to me that I might have missed in class. They would come visit me in the hospital to cheer me up, and regale me with stories of the happenings on campus. They would call my RA in the night, or beg a friend to drive me off campus to my doctor’s appointment. Be a good friend, and you will have good friends. When you are healthy, take care of your friends, don’t gossip, don’t be a B!, and look out for them. It might be something as simple as picking up an extra sandwich for a friend at the library, or picking up their mail. It’s the little things that count. You can’t make it through college without great friends!

Step 6: Call Home! When the chips are down, and you don’t know what to do, call mom or dad—they will see you through. Sometimes, it’s just the regular contact with someone that unconditionally loves you that will boost wind in your sails. Your family is still there for you, and love you, so if you are sad, depressed, stressed or upset, they should be the one you call. They can give you advice, run interference, and balance you out. So don’t think you are an island—remember, home is just a phone call away.

Step 7: Find your Inner Place. For some it’s in the Bible, church, or God. For others its in yoga, meditation, or nature. Find your inner peace, your inner place where you can center yourself. Learn to love yourself. You are worthy, you are loved. Don’t live 1 day without connecting to that Higher Source.

Step 8: Have fun! College is a wonderful experience, so enjoy and savor every moment of it. Build memories that will last a lifetime. Enjoy the process of learning new things. Explore who you are. Fall in love. Live everyday full and say yes to the experiences, joys and blessings that are coming your way. You deserve it.