You want to be as healthy as possible, so you can do all the things you like to do. Staying healthy might be tougher for you, but it can be done. There are thousands of patients, young and old, living with primary immunodeficiency (PI) doing exactly that.
First, it helps to know about PI. It may seem complicated, but if you learn more about your disorder, you can better manage your health and more easily explain it to others. To better understand the basics, IDF has the resources to get you started.
What are the parts of the immune system?
- In Tune with Your Immune System – Check out this rock video that compares the human immune system to a band.
- Our Immune System – Download IDF’s popular children’s book. Yes, we created this storybook for little kids, but people of all ages like it because it is easy to understand.
- The Immune System and Primary Immunodeficiency Diseases – Reading this description of the immune system is more like reading one of your textbooks, but it can help you understand, in more detail, the science behind PI. It is taken from the IDF Patient & Family Handbook.
Next time you visit your doctor, ask more questions about PI, including
- What part of my immune system doesn’t work properly?
- Why doesn’t it work properly?
- Will it ever work properly?
- Can I do anything to help my immune system work better?
Understanding Your Treatment
You probably take medications and/or receive immunoglobulin (Ig) treatment. It is important to know the name of each medication and treatment you are on, why you need them and why you have to take them like you’re supposed to. When you turn 18, your parents will no longer have access to your medical information unless you give them written permission, so it’s really important that you know the specifics of your medications and treatment. Download the following checklists to get you on the right track.
- Transition Skills Checklist (Ages 12 – 14)
- Transition Skills Checklist (Ages 15 – 17)
- Transition Skills Checklist (Ages 18 & up)
Feelings and Emotions
Having a chronic illness can be tough on your body, but it can also affect your emotions. Understanding how you are feeling emotionally is as important as understanding how you are feeling physically. Try not to ignore your feelings. Remember that you are not alone, and there are things you can do to take care of your emotional health.
- Connect with other teens living with PI. There are others out there with the same condition you have that are feeling the same way. You can connect through social media, including IDF Common Ground, a discussion forum for teens. Try it out and get connected. When possible, attend an IDF event that features special programs for teens, like IDF Teen Escape, IDF National Conference, or IDF Retreat.
- Be honest with yourself and others about how you are feeling. If having PI or being sick a lot makes you sad, depressed or angry, it’s okay to feel that way and talk about it.
- Talk to someone who cares about you. Sometimes it is as easy as sitting down with a family member or friend who will just let you vent. School counselors and professional therapists can also be good listeners when you just need to talk about how you feel.
Dealing with Stress
Have you ever felt under a lot of pressure? Maybe when you had a presentation in school or before you had a big game or recital? You may have felt nervous and a little overwhelmed. This is your body responding to stress. You not only have to deal with the normal stressful situations, but you also have the stress of having a chronic illness. You can manage stress by:
- Know the signs that you are stressed. Do you bite your nails or pace around the room? You should know the early warning signs that you are feeling stress. The sooner you realize that you are stressed the easier it will be to do something about it.
- Figure out what causes you stress. Make a list and try to determine which things you can easily take care of and the things that make take a little more work.
- Take action. Look at your list and try to come up with ways to reduce your stress. Let’s say, for example, completing math homework is stressful. One solution might be to ask the teacher for extra help before or after school.
For more information about dealing with stress, visit http://kidshealth.org/teen/your_mind/emotions/stress.html#cat20130.
Staying healthy means making healthy choices. The everyday choices you make will affect your health in the future.
Nutrition - A healthy diet gives you the nutrients you need to grow. Poor nutrition can lead to illnesses, including infections that you are already at risk for. Eat plenty of colorful vegetables and fruits. Remember, pizza sauce and French fries don’t count as vegetables! You should also have whole grains, like whole-wheat bread, whole-grain pasta and brown rice, and a healthy source of protein, like fish, poultry, beans, or nuts. Drink water, and limit milk or dairy products to about one or two each day.
If you have special dietary restrictions, talk with your healthcare team about what you should be eating.
Sleep - Studies show that most teens don’t get enough sleep. Teens need about eight or nine hours of sleep each night. Here are a few tips to help you sleep:
- Go to sleep and wake up at about the same time each day.
- Avoid late nights.
- Avoid consumption of caffeine (such as caffeinated coffee, sodas or tea) in the evening.
- Avoid eating heavy meals in the evening or snacking right before bedtime.
- Avoid things that will disrupt your sleep, like friends calling late at night.
- Avoid long naps during the day that could interfere with the regular sleep schedule.
For more information about sleep, visit http://kidshealth.org/teen/homework/health/how_much_sleep.html#cat20753.
Exercise - A healthy lifestyle always includes exercise. Having PI should not keep you from exercising, although you may have some limitations depending upon your diagnosis. Consult with your doctor before you start any exercise routine. Before you start working out, think about your current level of fitness—be realistic about what you can do. Do the things you enjoy, avoid comparing yourself to others, and set realistic goals to help you stay on track. Exercise can help relieve stress and anxiety, and being physically fit can also improve your mood and attitude.
If you have more questions about what to eat, how much to sleep or what exercise to do, you can always ask your doctor or nurse for advice.