Respiratory Manifestations in hEDS & HSD: What You Should Know
While most people associate hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) with joint issues, pain, and fatigue, there’s another area that often goes overlooked: the respiratory system.
Understanding the respiratory concerns that may arise for some individuals with hEDS or HSD can lead to better care and improved quality of life.
How Can hEDS & HSD Affect Breathing?
Because connective tissue plays a structural role throughout the body—including the lungs, airways, and respiratory muscles—weakened or loose tissue can impact how the respiratory system functions.
Common Respiratory Symptoms & Complications
People with hEDS or HSD may experience:
Shortness of breath, even with mild exertion
Weakened respiratory muscles, leading to fatigue or inefficient breathing
Discomfort with deep breathing or chest tightness
Persistent coughing or mucus production
Noisy breathing, hoarseness, or weak voice
Coughing during sleep or after lying flat
Airway collapse due to soft or collapsible trachea or bronchi
Lungs holding more air than usual
Sudden throat spasms, or vocal cord dysfunction
Asthma-like symptoms
Chest wall abnormalities, which may restrict movement of the ribcage
Narrowed airways, causing resistance to airflow
Because these symptoms can overlap with more common respiratory conditions such as asthma, they are frequently overlooked—leading to delays in diagnosis and treatment.
Why These Symptoms Are Often Missed
Respiratory manifestations in hEDS and HSD aren’t well known outside of specialty clinics. As a result, patients may be told their symptoms are due to:
Anxiety
Poor fitness
A viral illness
Vocal strain
But if you're consistently experiencing respiratory symptoms without a clear explanation—or if standard treatments aren't working—it might be worth exploring how your connective tissue diagnosis may be playing a role.
Management Strategies for Respiratory Symptoms
While each individual’s experience is different, the following strategies can often help reduce symptoms and support respiratory health:
Physical Therapy (PT) or Physiotherapy
Strengthens respiratory and postural muscles. Improves breathing mechanics and endurance. Teaches safer ways to move and exercise with instability.
Speech & Voice Therapy
Addresses vocal cord dysfunction, hoarseness, and weak voice. Helps coordinate breathing with speech. Supports those experiencing cough or throat tightness.
Environmental Modifications
Avoiding smoke, strong scents, and airborne allergens can be beneficial. Use HEPA filters or masks when needed. Manage temperature and humidity sensitivity.
Compression Garments
Compression can be helpful for improving postural control, reducing chest wall strain, enhancing proprioception or body awareness, and supporting circulation, especially if dysautonomia is present.
Medication Considerations
Avoid fluoroquinolone antibiotics (e.g., ciprofloxacin, levofloxacin), which can further damage connective tissue. Work with a knowledgeable healthcare provider to assess whether asthma meds, mast cell stabilizers, or reflux treatment may help
Treat Comorbid Conditions
These may include dysautonomia (including postural orthostatic tachycardia syndrome/POTS), mast cell activation syndrome (MCAS), reflux (gastroesophageal reflux disease or GERD), obstructive sleep apnea (OSA), or asthma. Addressing these conditions may reduce the overall respiratory burden and improve symptoms like breathlessness, fatigue, or coughing.
Thoughtful Surgical Planning
Always inform anesthesiologists and surgeons of your hEDS or HSD diagnosis. Plan ahead for post-operative respiratory support or complications. Avoid intubation trauma by communicating about airway sensitivity.
Breathing difficulties in hEDS and HSD are real and often underrecognized. You don’t have to “just live with it” or push through symptoms that interfere with your daily life.
Being proactive, informed, and supported by knowledgeable healthcare providers can make a major difference in both how you breathe—and how you live.
You deserve care that sees the full picture. Your breathing matters, too.
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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.