Tips for Kids with Pulmonary Hypertension

Here are some ideas from kids with pulmonary hypertension who have found creative ways to have fun while living with PH. If you have a tip you’d like to share with other PH kids, email it to Kids@PHAssociation.org and you might see it here!

How to make the hospital fun

Dread hospital visits? Here are tips from other kids who have PH:

Kathleen, age 13, suggests:

  • Invite friends to visit you in the hospital

    PH Kid doing art at the hospitalJocelyn, age 13

  • Do fun activities, like crafts
  • Bring a friend to hang out with between medical tests
  • Play games while you wait
  • Keep your hair looking nice by braiding it before a hospital stay

Anna, age 11, suggests:

  • Do what's fun for you - fun is different for everyone!
  • Draw pictures
  • Read a good book
  • Play games like 20 questions or Pictionary
  • Catch up on some sleep

How to miss school without falling behind 

Ideas from other kids with PH:

  • Get an extra set of books so you don't have to carry yours to and from school. - Kathleen, age 13
  • Meet with all your teachers at the beginning of the year to explain PH. - Danielle, age 15
  • I am homeschooled now because going to school full time was too tiring. I like being homeschooled because I can work on what I want when I want. - Kendra, age 11

Here are some more suggestions:

  • Have your parents put in a homework request as soon as you begin to miss school.
  • Make a schedule of when your assignments are due. Print out a calendar and mark due dates so you can easily see them and keep track, even when you're absent.
  • Get your friends to send you class notes every day.
  • Have teachers identify what tests can be made up.
  • If you feel well enough, keep up on your reading.
  • If you're not ready to take a test — because you’ve missed classes for appointments or fallen behind in your homework during illness — don't take it. Explain to your teacher that you need a few more days to prepare. Do this with respect, and always be nice. Don’t take advantage of this. Be responsible! If needed, get your parents involved or speak with your principal.

How to play sports (without overdoing it)

Advice from PH Pediatricians

  • Talk to your doctor before starting a new sport
  • If one sport doesn’t work for you, try another!
  • Know when to call your own time-out – if you feel tired or feel symptoms coming on while playing a sport, take a break
  • Make sure you’re staying hydrated!

Advice from PH Athletes

 Isaiah playing soccerIsaiah, age 8

"I think that if PH kids are able to play sports, I really believe that they should try it out. Sports are a part of every normal kid’s life and PH kids should be able to live a normal life even though they have this disease. From my experiences playing sports, just going out on the field to play makes me feel great, knowing that I have accomplished so much and that I feel just like any other kid out there with me." - Sam, age 14

Camille, age 16, says:

  • Participate in those sports that aren’t too strenuous
  • Make sure you feel comfortable doing the sport or activity

Danielle, age 10, suggests:

  • Play hockey, soccer and take yoga classes – I haven’t had any shortness of breath with these
  • Even if it’s difficult to win, play just for the enjoyment of the game
  • Even though I have PH, it hasn’t stopped me from doing sports that I like to do

These tips are compiled from Pathlight articles by PH patient Camille Frede in 2007 and 2008.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.