Respiratory Manifestations in hEDS and HSD

Some people with hEDS (hypermobile Ehlers-Danlos syndrome) or HSD (hypermobility spectrum disorder) experience respiratory manifestations.

Symptoms and complications can include:

  • Lungs not working as well as they should to move oxygen into blood and remove carbon dioxide from it

  • Coughing and mucus production

  • Muscles weaker than normal

  • Shortness of breath

  • Discomfort when breathing

  • Chest wall deformities

  • Hoarseness or weak voice

  • Tubes carrying air in and out of  lungs becoming too soft and closing up (airway collapse) 

  • Coughing during sleep

  • Asthmatic symptoms

  • Lungs stretching too easily when breathing in

  • Sudden throat muscle tightening that blocks breathing (spasms)

  • Narrowing of the airway

  • Lungs holding more air than usual

Respiratory issues that can be seen in some people with hEDS and HSD often go unrecognized. Understanding and managing these challenges is crucial, as they can significantly impact daily activities and quality of life.

Management strategies can include: 

  • Physical therapy (PT) or physiotherapy to strengthen the respiratory muscles and learn safe ways to exercise or engage in physical activity 

  • Speech therapy to help with voice, speech, swallowing, breathing coordination, etc. 

  • Avoiding potential triggers like smoke, allergens, etc. 

  • Wearing compression garments to help with postural stability, support the chest wall, and improve proprioception (awareness of body position) 

  • Avoiding use of fluoroquinolones (antibiotic sometimes prescribed to treat bacterial infections)

  • Thoughtful consideration before surgery 

  • Treating conditions that may be playing a role in symptoms, such as reflux, dysautonomia (including POTS/postural orthostatic tachycardia syndrome), mast cell activation syndrome (MCAS), asthma, and obstructive sleep apnea (OSA)

Taking a proactive approach can help reduce symptoms and improve overall respiratory health and quality of life.

PMID: 34291699

Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.

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