An Introduction to FOP Lung Health

Dr. Angela Cheung presented information regarding why lung health is a critical aspect of care management for those living with FOP and practices to incorporate into daily life for optimal outcomes.

Access the full FOP Treatment Guidelines to share with your local healthcare provider.

Additional Activities for Lung Health:

  1. Do the 3 simple exercises for adults shared in this 5-minute video by FOP mom Marie Fahlberg from Sweden.
  2. Play this fun game with children. Want to create a beautiful piece of art while you exercise your lungs? Mix water, a small amount of dish soap and washable paint in the cup. Place a piece of paper underneath the cup and watch it overflow with colored bubbles as the child blows in the straw!
  3. Use a spirometer or peak flow whistle (for children under the age of 12).  

Spirometer     

You can find written instructions for use here in English.

You can find written instructions for use that can be translated here.

View a video demonstration by FOP medical expert Dr. Edward Hsiao on how to use a spirometer.                                                                        

Peak Flow Whistle

Resources for Safe Swallowing (Proactive Steps for those With Decreased Respiratory Function and/or Swallowing Difficulties)

Follow general safe swallowing precautions including:

  • Being positioned in a fully upright (90-degree angle) or as upright as possible during and 30-45 minutes after eating and drinking
  • Taking small bites and sips (size of a quarter)
  • Not talking while chewing and swallowing
  • Eating slowly, and ensure food has been completely swallowed before taking the next bite/drink
  • Alternating solids with liquids (take a bite then take a drink)

If you notice a change or are experiencing any difficulties with swallowing talk with your primary care provider about getting treatment from or at least consulting with a speech-language pathologist. This specialist can help with:

  • Determining if diet modifications are necessary and what those are
  • Teaching safe swallowing precautions

Additionally, ask your primary care provider about the benefits of a modified barium swallow study/videofluoroscopy swallow study.

  • Provide a baseline of swallow function
  • Determine if a swallowing disorder is present and if penetration/aspiration is occurring

Tools to Support Lung Health

Explore the Pulmonary Health section of the online Ability Toolbox Guidebook to explore common tools to use for lung health and airway safety.

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