So, who am I?

Who am I, and why have I made this blog?

I'm Arwyn, and I just recently turned 27 years old. I've been married since 2004 and have two daughters, ages 3 and 1.

I also have a disorder called spasmodic dysphonia, specifically the abductor type, which I have had since 2003 but was not diagnosed with until 2006. While I have this disorder, I am not THE disorder. It does not define who I am, although it does make things a little bit difficult.

The purpose of this blog is so others with spasmodic dysphonia, young or old, the recently diagnosed or those who have had it for years, can see my experiences. Perhaps the reader could relate, or maybe find some useful information.

And what's spasmodic dysphonia?

If you have it, you probably know the basics. But for those readers who don't, from the Wikipedia page:

Spasmodic dysphonia (or laryngeal dystonia) is a voice disorder characterized by involuntary movements of one or more muscles of the larynx (vocal folds or voice box) during speech.[1] Spasmodic dysphonia is often referred to as SD.

My specific type, abductor, involves the vocal cords being pulled apart, which leaves me talking in a breathy, whispery voice. Adductor type, the more common of the two, involves the vocal cords stiffening and being slammed together, and the person talks in a strained or strangled voice. A person can also be a mixed type, having both qualities. Often, singing and laughing aren't affected, and I can definitely say this from experience. Sometimes I will make a squawking sound so my husband knows I have something to say :P.

Spasmodic dysphonia is thought to be neurological, so something related to the brain and nerves versus a structural problem with the larynx. SD typically affects people around 30-50, but as you can see, I've had it since my early 20s (I got it at the age of 21, three days before my 22nd birthday) and one of my doctors said he treated someone as young as 17, I believe. It is also believed to affect roughly 50,000 people, so it's quite rare. Of that number, less than 10% are afflicted with abductor type--so roughly 5,000 people.

Where the confusion lies, though, is what causes spasmodic dysphonia. When I was diagnosed in 2006, one of my doctors stated that some believe it may be related to bronchitis. I did, in fact, have bronchitis shortly before I got spasmodic dysphonia. Some think it may be hereditary. My parents don't have it, nor did my grandparents, so who knows. I have a cousin who claimed that she went through something similar in high school, but she took voice therapy and it went away. In her case, I think it's probably related more to a muscle tension dysphonia, as she does not have problems today, and it sounds like it was a one-time deal.

Is there a cure?

None yet, but there are ways to treat such as voice therapy and Botox. I've never tried Botox, and I don't care to. Voice therapy can work wonders. I can speak in a higher or lower voice and my voice will be clearer, too, but I only use that for extreme circumstances when I can't really do exercises on the spot. You can also see if you can get a voice amplifier, which isn't a way to treat, but a way you can manage a bit better.

Despite what my friend Shane seems to think, lemon tea won't do a thing. He recommends it every time he's around when my voice goes out on me.

Next post: How everything began, and I'll post some sound clips and/or videos.