ADDER - Spasmodic Disphonia - Interim Definition

Action for Dystonia, Diagnosis, Education & Research

A.D.D.E.R.

	Patrons:	Denise Robertson
		Dr Miriam Stoppard
		Vicki Archer

This paper is designed as an assistance to people in defining what Spasmodic Dysphonia is, how it can affect people and helping to determine which type you nfight have. The information is taken from the Epidemiological Survey of Dystonia (ESD), which was completed after six full years of research from 6th May 1993 to 5th May 1999 with 937 people registered in the North East of England.

There were 53 people with Spasmodic Dysphonia in the ESD. 3 of whom have it as secondary to a stroke or an aneurysm, in 2 cases it was considered to be pyschogenic, 1 person has it, as well as Parkinson's Disease (thought not to be related) and 1 person has it with Writer's Cramp, i.e. dystonia of the hand. However the remaining 46 people have just SD or dystonia of the larynx.

There are 45 North Riding Infirmary patients, 2 more are registered at Hunters Moor Hospital in Newcastle, 3 others are local to the North East but do not go to any hospital currently and 3 are from afar and were part of the research controls in previous research into the use and eactiveness of Botulinum Toxin therapy in its treatment.

Darlington is a typical North Eastern town with approximately 100,000 population. Therefore, using Darfington as a testing ground for the research, it has currently the highest concentration of dystonia anywhere in the world, with currently 48.14 people per 100,000 people with dystonia. There were 4 Spasmodic Dysphonias in Postal Codes DL1, DL2 and DL3, thus making an average 3.92 cases of SD per 100,000 people in the town.

Regarding Adductor as opposed to Abductor Dysphonia and quoting from " Laryngeal Dystonia " by Mitchell Brin, Andrew Blitzer and Celia Stewart in Dystonia 3: Advances in Neurology, Vol. 78: "Patients with adductor SD exhibit a choked, strained-strangled voice quality with abrupt initiation and termination of voicing resulting in short breaks in phonation. Patients with abductor SD exhibit a breathy, effortful voice quality with abrupt termination of voicing resulting in aphonic whispered segments of speech." These three doctors have 639 Adductor patients (85.5%) and 108 Abductor patients (14.5%) between them in New York, USA. The former are easier to treat than the latter and generally produce better results. In the past, Spasmodic Dysphonia was often considered a psychological disorder, our research has proven that in less than 4% of cases was it considered to be pyschogenic and this is not proven, only thought to be the only reason the larynx does not respond to various treatments, as all other larynxes do.

The North Riding Infirmary's Otolaryngeal Department has 45 SD patients, 6 of whom have Abductor Dysphonia (13.3%) with unusual combinations, whereas the remaining 39 have Adductor Dysphonia (86.6%), which is generally much better at responding to Botulinum Toxin. Although the ESD did not specifically differentiate between Adductor and Abductor Dysphonia during the research, it is known there are tremendous di&rences when treating, particularly when injecting Botulinum Toxin into the larynx. These figures compare very well with the New York data (within 1.2%) and are statistically significant.

The following shows where all 53 people with dysphonia live, according to Post Code:-

This just goes to show how much more there is to do. Why do we have only 2 people with Spasmodic Dysphonia in Sunderland, 3 in Tyne & Wear and Northumberland and yet 13 on Teesside? We need to contact the Speech Therapists and Otolaryngeal Surgeons in these areas - there must be statistically far more in these areas, but where are they ?

If we use Darlington's statistics again, being the most reliable as our base, with 3.92 per 100,000 people and based on a population of 2.6 million in the North East alone, there should be 102 people with SD in this region - we have just 33 known in the ESD or roughly a third. So we ask again, where are they ? The reason is obvious. People with SD do not normally get to see a Neurologist or an Otolaryngeal Surgeon, but another doctor who does not recognise this condition unless they are very lucky. Where are the other 69 people ? How long will it take them to get some effective treatment ?