Dystonia 9 is a rare genetic condition that involves uncontrollable muscle movements, known as attacks, on one or both sides of the body. The attacks usually last from a few minutes to a few hours long. The attacks can occur several times a week or only several times a year. Individuals with this condition also have stiffness of the leg muscles, progressive leg muscle weakness, and increased leg muscle tone. Some individuals with this condition also have an intellectual disability, as well as seizures, migraines, and the loss of control of body movements.
Dystonia 9 usually begins in childhood or the early teen years, but it can also appear later in adulthood. Individuals should try to avoid alcohol and caffeine as much as possible, as these can lead to more attacks. There are drug therapies for this condition that have been shown to work very well and reduce or even eliminate these attacks. Because of the drug therapies, individuals with this condition can live normal lives. The attacks also tend to get better with age.
Dystonia 9 is inherited in an autosomal dominant manner. We inherit our genes in pairs, typically one from each parent. Our genes are what control the growth, development, and function of our bodies. If a mistake or error occurs in a gene, it can cause problems. Autosomal dominant means an individual inherits only one copy of the changed gene, or mutation, in order to have Dystonia 9. If both parents carry one copy of the changed gene, they have the condition, and their children would have a 75% chance of having the condition. If only one parent carries a copy of the changed gene, their children have a 50% chance of having Dystonia 9.
If you or a family member has been diagnosed with Dystonia 9, talk with your doctor about the most current treatment options. Support groups are also good resources for support and information.