Dystonia
You don't die from dystonia. But you want to. It's sort of like a life sentence, as opposed to a death sentence - Lori Raines
image by: Dystonia UK
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Disease and the Public Eye
I’M in line at the supermarket holding three items close to my chest. But I might as well be juggling my Kleenex box, toothpaste tube and an orange. Because — as you’d surely notice if you were behind me in line — I‘m bent forward at a sharp angle, which makes holding things difficult. I know you don’t want to stare, but you do. Maybe you think you’re being considerate when you say, apropos of nothing, “You look like you’re in pain.” Well, thanks, I am — but I’ll resist replying the way I want (“You look like you’re having a bad hair day”). I’m sorry. I know you mean well. Anyway it’s my turn at the register which means I’m closer to being at home where I can lie down and wait for the spasms…
Resources
Detecting Dystonia
New AI platform provides diagnosis with high accuracy.
A Disorder That Stops the Music
Musician’s dystonia most commonly affects the hand, causing fingers to curl under or jut out inappropriately. It occurs not only among pianists but also among string and woodwind players, guitarists and percussionists.
A History of Dystonia: Ancient to Modern
Before 1911, when Hermann Oppenheim introduced the term dystonia, this movement disorder lacked a unifying descriptor. While words like epilepsy, apoplexy, and palsy have had their meanings since antiquity, references to dystonia are much harder to identify in historical documents.
Could Brain Surgery Save A Father And Son?
Carl Luepker was 10 years old when he first noticed his right hand twitching slightly when he played piano. It was like it had a mind of his own. When he was 12, doctors diagnosed him with a degenerative nerve disease called dystonia. The disorder causes nerves in the brain to misfire, causing uncontrolled muscle spasms that get worse over time.
Meet the Artist Making Headpieces Out of His Facial Dystonia Diagnosis
Tiago Valente’s headpieces take an anthropological look at health, capitalism, and anthropology.
Mysterious disorder a 'life sentence'
Dystonia is often cloaked in mystery and can take years to diagnose. In most cases, dystonia's cause is unknown, and there is no cure. Patients and medical professionals agree dystonia awareness lags far behind other movement disorders such as Parkinson's disease and multiple sclerosis.
New Efforts Help Patients Get Back in Control
Exactly what goes awry in the brain is unknown, but Dr. Bressman's team has identified some genes that result in dystonia, including one for generalized dystonia that arises in children.
New Gains in Treating Puzzling Disease That Causes Involuntary Movements
It can stop musicians from playing their instruments, surgeons from holding a scalpel and golfers from swinging a club. It might start as writer's cramp or a sudden stiffening of the neck, but it can twist a child's body like a pretzel and force otherwise normal adults to walk with bizarre, jerky movements.
Bachmann-Strauss Fellowship in Dystonia Research
Established in 2021, the Bachmann-Strauss Fellowship in Dystonia Research will support a next generation of dystonia researchers to improve understanding and treatment of this movement disorder.
Disease and the Public Eye
I have dystonia, a neurological disorder. Some years ago, for reasons no one knows, the muscles in my back and neck began to spasm involuntarily; the spasms multiply quickly, fatigue the muscles and force the body into repetitive movements and awkward postures like mine.
Dystonia Coalition
The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups that is working to advance the pace of clinical and translational research in the dystonias to find better treatments.
Dystonia Europe
Dystonia Europe is a non-profit organisation registered in Belgium and serving the needs of everybody with an interest in dystonia.
Dystonia Medical Research Foundation
The mission of the DMRF is to advance research for more treatments and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families.
Dystonia UK
The Society was established to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups.
National Spasmodic Dysphonia Association
The mission of the NSDA is to advance medical research into the causes of and treatments for spasmodic dysphonia, promote physician and public awareness of the disorder, and provide support to those affected by spasmodic dysphonia.
MovementDisorders.org
Dystonia is a movement disorder characterized by sustained or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. Dystonic movements are typically patterned, twisting, and may be tremulous. Dystonia is often initiated or worsened by voluntary action and associated with overflow muscle activation.
National Institute of Neurological Disorders and Stroke
Dystonia can affect many different parts of the body, and the symptoms are different depending upon the form of dystonia. Early symptoms may include a foot cramp or a tendency for one foot to turn or drag—either sporadically or after running or walking some distance—or a worsening in handwriting after writing several lines. In other instances, the neck may turn or pull involuntarily, especially when the person is tired or under stress.
National Spasmodic Torticollis Association
The mission of the National Spasmodic Torticollis Association is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.
MayoClinic
There's no cure for dystonia. But medications can improve symptoms. Surgery is sometimes used to disable or regulate nerves or certain brain regions in people with severe dystonia.
Benign Essential Blepharospasm Research Foundation
The Foundation is the only organization solely dedicated to finding the cause and a cure for blepharospasm and Meige. It is a volunteer non-profit organization that relies entirely on public and private charitable donations.
My Life With A Movement Disorder
A place for me to speak about my disorder and connect with others who have similar disorders
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