Teens and Young Adults

Welcome

Here you can learn more about sickle cell, share with other teens and young adults living with sickle cell, get tips for staying healthy and get prepared for the transition to an adult doctor.

Staying Healthy

In order to live well with sickle cell disease (SCD), you must take an active role in your health care. You need to understand what SCD is, how it affects your body, your treatment options, and how to prevent problems. This section will give you some tips to help you manage your SCD.

Live a healthy lifestyle

This means doing things that will help you to stay healthy like drinking enough, eating well, sleeping at least 8 hours per night and exercising regularly.

Drinking

People living with sickle cell need to drink at least 64 ounces (8 glasses) of water/fluids each day. This keeps red blood cells from sticking together. To stay healthy, aim for zero sugary drinks like soft drinks.

Eating

People living with sickle cell should eat a well-balanced diet (see the My Plate website for what to eat for your age). This includes whole grains, lean protein, low-fat dairy, and fruits and vegetables. At every meal, try to make your plate look like this:

There are some other vitamins and minerals people with sickle cell should be aware of:

Folic Acid/Folate

Make sure you eat foods rich in Vitamin B9 (also called Folic Acid). Folic acid helps you make new red blood cells.Click here for a list of foods high in Folic Acid

Antioxidants (Vitamins A, C, and E)

These vitamins help protect cells from damage. Some research has found that people with sickle cell disease who took antioxidants each day, had more energy and less sickle cell pain events. Foods that are high in antioxidants are typically bright in color such as leafy greens, fruits and vegetables.

Ohnishi ST, et al Sickle Cell Anemia: A Potential Nutritional Approach for a Molecular Disease Nutrition 2000 (May); 16 (5): 330-338
Fiber

Some medications used to treat sickle cell cause constipation. One way to prevent this is make sure you eat foods high in fiber each day.Click here for a list of some high fiber foods.

Good Food Sources
Folic Acid/Folate Antioxidants Fiber
Spinach
Dark green leafy vegetables
Black eyed peas
Breakfast cereal
Avocado
Mustard greens
Kidney beans
Dark green leafy vegetables
Whole grains
Seeds
Nut butter (like peanut butter)
Citrus fruits
Strawberries
Blueberries
Sweet peppers
Whole grains
Bran
Fruits
Vegetables

Sleep

All teens and young adults should try to sleep at least 8 hours every night. Remember not to sleep in too long on the weekends. Also, make sure you rest in between activities during the day.

Avoid Sickle Cell Triggers

Balanced body temperature

People with sickle cell should make sure that they don’t get too hot or too cold. The goal is to keep a balanced body temperature.

Pace yourself

Being active is essential but you should not over do it. Take breaks and make sure you drink enough water when you are active.

Prepare for changes in altitude

High altitudes can cause red blood cells to breakdown and lead to sickling. Although the plane is pressurized to keep oxygen at a level that works for most people, it may not be enough for some people with sickle cell. They may require some oxygen. Talk with your doctor about this before you travel.

Travel Smart

Stay hydrated and dress in layers. The air in airplanes and the airport can be dry so you will need to drink more to stay hydrated. You don’t want to get too cold or too hot. You may need a blanket or sweat shirt. If your plane ride is longer than 2 hours, make sure you get up and move around. This will help your circulation.

Avoid getting stressed out

Stress can come from both positive and negative events in our lives. It is essential that you manage your stress well because doing this can decrease your risk for SCD complications.

Exercise

It is important that all teens and young adults exercise at least 30 minutes a day 3-4 days per week. To make sure you don’t get too tired, try breaking your exercise up into smaller time periods like 10 minutes at a time. You may also want to do low impact types of exercises like walking or yoga.

Take Medications the Way Your Doctor Told You To

It is important that you take any medicines the way the doctor told you to. This will help the doctor tell if the medicine is working like it is supposed to or if another treatment is needed. If you have side-effects, tell your doctor right away so your medicine can be changed or stopped safely.

Get your Immunizations (pronounced: im-myoo-ni-zay-shuns).

These are shots that help protect you from getting infections. Infections can be serious when you have sickle cell disease.

Have a Pain Action Plan

It is important for you to know what to do when you have pain. It is too hard to think sometimes when you are hurting. So if you already have your plan written down, this will make things easier. Your pain action plan should include things to do when you have mild, moderate or severe pain. You should also check on your pain every 30 minutes to 1 hour to see if it is getting better. The best pain plans include over the counter medicines, prescription medicines, and other things you can do like relaxation, distraction (e.g, listening to music) and using a heating pad.

Get Regular Check-Ups

It is important that you get regular check-ups if you have sickle cell. The doctor needs to examine you and check your blood levels to prevent serious medical problems.

Get Your Treatments on Time

Make sure if you are supposed to get blood transfusions every month that you come in to get them on time. It is important that you get a transfusion on time so that your red blood cell level will not get too low. Low blood levels can cause you to feel tired and put you at risk for infections.

Learn More About Sickle Cell

You can visit websites like: the Sickle Cell Information Center. This website has a ton of information about sickle cell in the US and around the world.

Managing SCD in High School

Going to high school with a chronic illness can be challenging. Not only do you have to keep track of your school assignments and activities. You also have to keep track of medical appointments and possibly take medications or treatments regularly (daily, weekly, monthly). This can be a lot to add on to your already busy schedule.

This page will give you some suggestions that teens with sickle cell have given us about managing it during high school.

Friends/ Social Life

  • It is important that you have a strong support system when you have a chronic illness like sickle cell. Knowing that others around you “have your back” and are willing to do what they can to help you feel better can make you feel more positive. Positive feelings can help you get better faster and stay healthy.
  • Sometimes you may have to miss out on social events because you don’t feel good, are too tired, have taken pain medicines, or need to be careful you don’t get sick. Help your friends understand your illness and that to be a friend means supporting you in different ways. Tell them to keep inviting you to things and when you feel good you will be there. They can also come and keep you company when you don’t feel good.

School

  • It is important that your teachers and school staff members (principal, guidance counselor, nurse, etc.) know that you have sickle cell. That way when you are absent there can be a plan to help you make up your work if you have to miss school because you are sick or have a doctor’s appointment.

Work

  • Working part-time while you are in high school can be a challenge. Doing this when you have a chronic illness like SCD can make it even harder.
  • If you choose to work part-time, remember that it is important to find a job that works well with your SCD. Check out these tips from the Virginia Sickle Cell Transition Intervention Program (TIP)if you plan to work.
  • It is also important that you know your rights if you are working. The OSHA website has great information about health and safety for teen workers.
  • You can also want to learn more about work and transition from this website

Family

  • High school is a time when teens and parents may not get along as well as they used to. There may be times when you don’t agree with your parents about things and you let them know about it!
  • SCD can make these normal teen/parent conflicts worse. You may need your parents to help you with medicines, appointments, or other things at a time when you are upset with them. It can be hard to ask for help when you have not been getting along that well.
  • BUT, it is REALLY important that you put that aside and ask for help and/or let your parents know if you have having a health problem. Your health is too important to be put on the back burner. Just tell your parents you need to take a time out and get what you need to be healthy!

Health

  • Teens with SCD must manage their health along with the regular stress of being in high school. Some specific issues that you may be dealing with related to your SCD include:
    • Delayed sexual maturity which can make you feel self-conscious
    • Anxiety about becoming addicted to pain medications
    • Anxiety from never knowing when SCD pain or a problem may hit.
  • Some teens find it helpful to talk with other teens with SCD who understand what they may be going through. If you are interested in this, talk to the social worker. She can recommend some support groups or websites that may be good for you.

Reference:

The Transition to Adult Care

Transitioning from being a teen to a young adult can be hard, especially when dealing with Sickle Cell Disease. Your parents or caregiver have probably been doing a lot for you since you were little.

Now is when you should start to talk to your parents or caregiver about managing your own care. Work with your parents or caregiver to start taking over tasks one by one. They can help you remember to take your medications, speak with your doctors, and manage your pain. This way, by the time you are an adult you are able to take care of yourself.

Nicholas, a 15 year old boy, is living proof that you can be a normal teenager and take care of sickle cell. Watch Nicholas’s story to see how he transitions:

Tiffany has SS and is now 26 years old. Listen to her amazing story:

Changing from a pediatric doctor to an adult doctor can be like going from grade school or middle school to high school. It is really different. It can make you a little worried but can also be exciting. It shows you are truly grown up. Being prepared can make the transition a lot easier.

Get Prepared

The best way to be prepared for the transition to adult care is getting educated.

Check out St. Jude’s Taking Control: Teens with Sickle Cell Disease guide
Get the facts about sickle cell and how to manage your own care. This guide will help you build the skills that you need as an adult living with sickle cell disease.

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Sickle Cell Disease and College Life

College is an exciting time for many young adults. It is a time of independence and new adventure. Young adults choose where to move, where to live, and what to study. This is also a time where young adults take the front seat in decision making regarding their personal health and wellness.

This can also be a time of stress for young adults. With the added responsibility of independence, young adults may worry about how they can handle it all. All college students have questions and concerns, whether they have sickle cell or not. Many people live healthy long lives with Sickle Cell Disease, and this includes going to college. The following tips will help you manage your Sickle Cell Disease while away at school:

Step 1: Find Good Medical Care

Transitioning into adult care is a key step in the management of Sickle Cell Disease. Make sure to find a new doctor if you move far away from home. Keep this doctor fully informed of your medical history. Having your medical records mailed to this new doctor is a great way to keep them in the loop.

Step 2: Practice Healthy Habits

A Sickle Cell Pain Crisis can be caused by infections such as the flu or the common cold. It is important to practice healthy habits to keep you from getting sick. Wash your hands often and don’t share things like drinks, chapstick, or eye makeup.

Step 3: Have a Healthy Diet

When moving away to school, your diet can change a lot. Make sure to eat healthy foods like fruits at vegetables while at school. Look for cafeterias or restaurants on campus that serve healthy foods.

Step 4: Exercise

With classes, dorm life, and spending time with new friends, it can be hard to work in time for physical activity. However, keeping active is a great way to prevent Sickle Cell pain crises. Work in fun ways to work out with your friends, or take up an exercise class. Make sure not to over-exert yourself.

Step 5: Sign Up for a 504 Plan

A 504 Plan can help you with day to day life. This is something you put together with the school to make adjustments for you. This might include living in a certain dorm or having a specific parking space if you are unable to walk far distances. It can also help you work with your new professors. You may need longer time taking tests or flexibility in turning in late assignments when you have pain crises.

Step 6: Stress Management

College can be a time of increased stress for many young adults. Increased stress can lead to poor health and even pain crises for people with Sickle Cell Disease. Make sure to know things that trigger your stress. Manage your stress in a healthy way through working out or other hobbies.

Step7: Stay on top of studies

Many new college students struggle with moving from high school to college. Make sure to avoid falling behind on your classes. Work hard to maintain good grades while you are healthy so that if something comes up you will be able to afford to miss class or catch up on work.

Step 8: Support System

Moving away from your family is one of the hardest things for new college students. It can be easy to find support in other ways, such as support systems of friends or classmates. An advisor can also be a place of support for students. Make sure you connect with someone so that in the event of a pain crisis you are supported.

Reference:

Sickle Cell Transition Intervention Program (TIP), Virginia Sickle Cell Awareness Program at the Virginia Department of Health and the Pediatric Comprehensive Sickle Cell Services Program, Children’s Hospital of the King’s Daughters, Norfolk, Virginia.
© 2016 Cincinnati Children's Hospital Medical Center