Ehlers-Danlos Syndrome Voice Treatment
Disclaimer: I am a speech pathologist, but I’m not your speech pathologist. This material is for your education and information only. This content does not replace medical advice, diagnosis, or treatment. New research may negate or change this information. If you have questions about a medical condition, always talk with your health care provider.
I have discussed several voice disorders in the past on this blog. I was also diagnosed with a connective tissue disorder (hypermobility spectrum disorder) a few years ago. Today, I want to talk about how voice disorders affect the hypermobile Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) population.
In case you’ve never heard of EDS, let me give you a brief introduction to this disorder. There are 13 different types of Ehlers-Danlos Syndromes, which are genetic disorders of connective tissue. Connective tissue is what holds your body together, and provides stabilization to organs and joints. EDS causes many different skin and joint issues - including hypermobility of the joints. One type of EDS also causes issues with blood vessels (vascular EDS, or vEDS). We have the genetic markers for 12 of them, but the most common type - the hypermobile type - can currently only be diagnosed clinically. Researchers are still working on determining the gene (or genes) that cause this type. In order to help with that research, the clinical diagnostic criteria for hypermobile EDS (hEDS) are rather strict. If a patient doesn’t meet the criteria in section B of the International Classification for hEDS, but they meet the criteria for section A and C, they are diagnosed with Hypermobility Spectrum Disorder (HSD). There is also the possibility of localized joint hypermobility. The criteria aren’t perfect, but hopefully, we’ll have genetic markers soon that make things less mucky.
Regardless of diagnosis with hEDS or HSD, some new research (Menton et al, Sharma et al, Birchall et al, Williams et al) points to an increased likelihood of voice complaints in this population. Given the amount of connective tissue in the neck - including in the larynx - this is not surprising. Without the typical stabilization for the structures in and around the larynx, voice issues can occur. (For a brief overview of the anatomy of the larynx, check out this blog post.)
I’ve worked with many patients with EDS and HSD, and have seen the predominant diagnosis for these patients is muscle tension dysphonia. I suspect that in an effort to make up for the instability, muscles try to take over to provide the needed support for the laryngeal structures. This causes pain with talking as well as vocal fatigue with voice use. It can also cause changes to vocal quality.
Working with a speech-language pathologist (SLP) can re-align the three subsystems of voicing. It is helpful if the SLP is EDS-aware, but at least having someone who is willing to learn about the disorder and take things slowly is important. While there is not currently any research that I’m aware of regarding treatment differences for patients with MTD in the setting of hEDS/HSD, I have found going slowly and keeping home practice sessions short, but more frequent throughout the day has been helpful. This is similar to what the physical therapy research has found.
Have you experienced a voice problem that you attribute to a diagnosis of EDS or HSD? If so, what have you found helpful? What are you still struggling with? I’d love to hear from you!