When Your Connective Tissue Affects Your Voice: Ehlers–Danlos Syndrome and Speech Therapy

At True Self Speech Therapy, we specialize in helping adults with complex neurological and voice concerns. Over the past two years, we’ve seen a growing number of clients with Ehlers–Danlos Syndrome (EDS) seeking our services for voice-related issues and new research is helping us better understand why.

What is Ehlers–Danlos Syndrome?

EDS is a hereditary connective tissue disorder that affects about 1 in 5,000 people in the U.S. It impacts collagen, the protein that gives strength and elasticity to tissues throughout the body. While EDS is most often associated with joint hypermobility, chronic pain, and fatigue, it can also affect the voice.

There are 13 known subtypes of EDS, but the two most common — hypermobile and classical types — account for about 90% of all cases.

How Can EDS Affect the Voice?

Because collagen plays a critical role in the vocal folds, changes in tissue elasticity can affect how the voice sounds and functions. People with EDS may experience:

• Hoarseness

• Vocal fatigue

• Difficulty speaking loudly

• Frequent throat clearing

• A feeling of strain or tightness when speaking

  
  

These symptoms may be linked to changes in the vocal fold tissue itself, reflux-related irritation, or other laryngeal changes such as supraglottic tension.

What the New Research Shows

A recent large-scale study published by the American Speech-Language-Hearing Association surveyed 437 people with EDS and found that:

• 86.9% had experienced a voice problem at some point in their life.

• 91.5% had voice concerns in the past 12 months.

• Only 20% had seen a speech-language pathologist for help.

• People with EDS and voice disorders were more likely to also have esophageal reflux or immune-related conditions.

• Voice problems often caused significant social and work limitations — much higher than in the general population.

  
  

Interestingly, many participants saw their voice problems as “acute” or short-term, even when symptoms developed gradually over time. This may mean voice concerns get overlooked while managing other, more visible EDS symptoms.

Why Speech Therapy Matters for EDS-Related Voice Issues

The study highlights a gap in care: the majority of people with EDS and voice problems aren’t receiving therapy, even though targeted intervention can improve communication and quality of life.

At True Self Speech Therapy, we help clients with EDS by:

• Identifying the underlying cause of voice changes through specialized assessment

• Reducing strain with individualized voice exercises

• Addressing reflux-related symptoms that may worsen voice quality

• Improving vocal endurance for work, social, and daily activities

• Teaching protective voice strategies to prevent overuse and injury

  
  

The Bottom Line

Voice changes in EDS are common but treatable. If you’re living with EDS and notice changes in your voice, don’t wait until it affects your ability to work, connect socially, or enjoy everyday conversation. Early intervention can make a difference.

If you suspect your voice has been impacted by EDS, contact us at True Self Speech Therapy. We’ll work with you (and your care team) to create a plan that helps your voice stay strong, clear, and reliable.

Disclaimer: This blog post is for informational purposes only and should not be considered a substitute for professional medical advice. Please consult with a qualified speech pathologist for a personalized evaluation and treatment plan.