I have worked in the healthcare industry for thirty years; the past eighteen as a specialist nurse. In all those years I have never once heard of SD. Diagnosis is not only missed, but is often dismissed as psychological. The implications are spiraling symptoms and feeling that no one believes you. Very few doctors have heard of this debilitating condition

Writing this article is a new experience, as I am now a patient which is a difficult adjustment having been a clinician for so long.

What is spasmodic dysphonia (SD)?

Adductor spasmodic dysphonia

Muscle spasms cause the vocal cords to tighten and slam shut. This causes interruptions in speech, so it feels like you are being strangled, or sounding like you are having a panic attack or nervous breakdown.

Abductor spasmodic dysphonia

This is different, in that the voice is weak and breathy. I can’t speak for those who suffer with it but it is equally as incapacitating

Mixed spasmodic dysphonia

There are those who suffer both types of dysphonia; although less common

I suffer with adductor dysphonia which is the most common.

Causes of spasmodic dysphonia

Very little is known about SD. Clinical presentation is usually in middle-age however, young people can also be affected. It affects women more than men though there is no research to quantify this. Doctors recognise it is a neurological condition originating from the basal ganglia (BG). Signals are normally sent from the BG to the vocal cords in order to speak. In SD the signals become mixed up causing the voice to stiffen resulting in interrupted, choppy speech.

This is exhausting as well as humiliating, as it comes across as extreme anxiety.

Consequently, my job has become a struggle, because I do have to speak to patients and present at meetings. I am now technically classed as having a disability, so have had to adapt my life. Long term implications for me are anxiety and shame.

From firsthand experience I can tell you there is a stigma. People do notice when my voice is not right, no one comments, but I can see it in their eyes. There are times when I cannot say my own name. It will come out as Ju….l…i..e . This makes me sound anxious, and others uncomfortable.

Before my diagnosis I learned to speak differently as in a higher pitch, quicker and dropping vowels from my words. It was almost like learning a new language, which is wearing and physically draining.

I was finally diagnosed with spasmodic dysphonia in January 2017.

A small scope was put down my nose; and there they were, my vocal cords on a television screen. Interestingly the doctor told me they thought it may be genetic (in my case it is not) or linked to traumatic life events which makes much more sense.

Treatment

Botox

I was injected straight into my neck; no local anesthetic. Both vocal cords were injected it was as simple as that.

There are other forms of treatment which I will not discuss in this article however, botox is the gold standard. There is no cure for SD only symptom control.

To date, I have had three injections. The second left me breathy sounding like I had severe laryngitis. My voice varies with each injection. It does eventually improve and the spasms stop however; it will never sound like my normal voice again. Speaking is less of an effort but botox is not magic so there is always an element of effort especially in noisy environments.

The stigma of SD can be incredibly isolating. There have been many occasions where I have cancelled plans as I am fatigued from speaking at work all day, or my voice simply isn’t there. Post injection I cannot drink fluids without aspirating unless I take tiny sips, and sometimes swallowing is painful. This is not something I want to show to the world so I choose to hide away.

There is so much more to share about SD and my mission is to do just that. I would like to raise awareness as well as educate other healthcare professionals about this complex and poorly understood condition.

Do you have a rare disease story you want to share? Let us know here.