Help your teen live with ITP

By Michelle Ponte

If you have a teenager, you know friends and peers are super important. Being “normal” matters a lot as they begin the transition to young adulthood. Having a chronic disease like ITP can be challenging during these years because it doesn’t always allow teens to blend in with the crowd. There will be those times when a friend will ask a pointed question about ITP, such as why he has to sit on the sidelines during a sport. Your teen may experience many feelings, including anxiety, fear, depression and anger. And he may not want to discuss any of them.

How do you talk your teen through it? We’re here to help. Here are a few pointers and steps you can take to help your teen get informed, work through his frustrations and learn to strike a balance between having fun and taking care of his health.

Four important conversations to have with your teen

Q: How Can I Help My Teen … connect with others who have ITP?
A: You may be your teen’s main cheerleader, but the reality is he also needs other sources of support. The Platelet Disorder Support Association (PDSA) is a great place to start, it offers an online discussion group specifically for teens, as well as Facebook groups for the entire ITP population.
The bottom line? Explain to your child that connecting with others who have ITP will help him feel less isolated, learn new coping skills, alleviate fear and anxiety and get practical advice.

Q: How Can I Help My Teen … really understand that ITP is not considered a terminal illness?
A: Explain to her that ITP rarely leads to death and that it's really considered a chronic illness. Read ITP information materials together that explain this in greater detail, develop a list of questions for the doctor and let her know that it is possible to go into remission.
The bottom line? With the right treatments, a close partnership with her doctor and paying close attention to her body to prevent injury, she can live a full life and have fun with her friends.

Q: How Can I Help My Teen … explain ITP to his friends?
A: Think small sound bites. Yes, ITP is a complicated disease, but help your teen come up with clear, simple responses to basic questions he might be asked by a peer. If your teen is open to it, suggest role-playing. Here are typical questions and suggested responses:
“Why are you going to the doctor? Are you sick?”
“I see my doctor for a bleeding disorder that causes me to bleed and bruise easily."

“Why aren’t you trying out for football this year?”
“I have to be more careful now because I have a bleeding disorder. I need to play sports with less contact because I bleed and bruise easily.”

“You seem upset lately, are you OK?”
“I have a bleeding disorder, which causes me to feel down at times. It also makes me feel tired. That’s because I have low blood platelet counts. My medicine can also make me feel this way.”

The bottom line? Talking it through in advance will help your teen feel prepared to discuss ITP with his or her friends, peers and teachers.

Q: How Can I Help My Teen … address her depression?
A: Let her know her feelings are normal. Then help her understand that the depression may be happening for numerous reasons, including medications she is taking to treat ITP, and low platelet counts, which can inhibit serotonin production, something that helps regulate our moods. It can also be because she's living with a chronic disease. Encourage her to talk about her feelings.
The bottom line? Teens don’t have to go through it alone. Medication, therapy and an open ear by you and their peers who have ITP are just some of the methods you can use to address this problem.

Is it OK if my teen plays sports?

Your teen is itching to play football, so what do you do? Football is a rough contact sport. You’re inclined to say “no.” It’s likely your teen will have to choose a safer sport. But before you make any decisions, get informed. Blood platelet levels and your teen’s physical condition (e.g., does he have any ITP symptoms such as bleeding and bruising?) will factor into determining the sports that are safe for him to play. The first step is to check with your teen’s hematologist for a full physical assessment.

“ITP doesn’t preclude the ability to exercise,” says Mike Tarantino, MD, a board-certified pediatric hematologist in Peoria, IL. “Exercise and fitness should be part of everyone’s life even if they have ITP. It can be customized to almost any person in any clinical situation.”

That being said, Tarantino suggests considering certain platelet guidelines before your child begins a sport. Those with lower platelet counts need to stick to non-contact, low-impact exercise, he adds, noting that he also reviews a list of sports and physical activity guidelines published by National Hemophilia Foundation with his patients.

It’s important to talk to your teen about the risks vs. the benefits of participating in certain activities. Ultimately, they won't be able to play some sports. But you can help them work through the frustration by talking about it and finding an alternate sports or activity.

The key point to remember: Encourage your teen to do some type of physical activity each day. It’s good for the body and has been shown to improve the symptoms of depression.

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