September is Dystonia Awareness Month
September is recognized as Dystonia Awareness Month—a time to shine a light on this challenging movement disorder, share resources, and raise support for the families affected.
At the DTDS Foundation, we’re especially committed to spreading awareness because dystonia is one of the hallmark symptoms of Dopamine Transporter Deficiency Syndrome (DTDS). Understanding dystonia helps doctors, therapists, and families provide better care for children living with DTDS and other rare neurological conditions.
What is Dystonia?
Dystonia is a neurological movement disorder that causes involuntary muscle contractions. These contractions can lead to twisting, repetitive movements, or abnormal postures that may be painful and unpredictable.
For some people, dystonia affects a single part of the body (such as the neck or hand). For others—like many children with DTDS—it may be more widespread, involving the arms, legs, or whole body.
If you’d like to learn more about dystonia beyond DTDS, we recommend visiting:
Dystonia in DTDS
In children with Dopamine Transporter Deficiency Syndrome, dystonia often appears alongside other movement challenges such as parkinsonism, muscle stiffness, and difficulty with coordination.
This symptom can:
Make it harder for children to control their movements.
Affect walking, sitting, or the ability to use their arms and hands.
Require adaptive equipment such as wheelchairs, braces, or supportive seating.
Lead to pain or fatigue if left unmanaged.
Understanding and treating dystonia is a critical part of improving quality of life for people with DTDS.
How is Dystonia Treated?
While there is currently no cure for dystonia, treatment focuses on symptom management and improving comfort. Families may work with a medical team to try:
Physical and occupational therapy to maintain mobility and reduce stiffness.
Medications that help relax muscles or adjust brain signaling.
Supportive equipment to aid positioning and prevent injury.
Specialized care from movement disorder specialists familiar with dystonia.
Every child’s journey looks different, but with the right supports, many families find ways to manage daily life more smoothly.
Why Awareness Matters
Dystonia is often misunderstood—or mistaken for clumsiness or poor posture. Raising awareness helps:
Families get earlier and more accurate diagnoses.
Doctors and therapists develop better treatment strategies.
The community better understand and support those affected.
For families navigating DTDS, greater awareness of dystonia means greater understanding of the daily challenges—and more hope for research that leads to solutions.
How You Can Help
Share this post to spread the word about Dystonia Awareness Month.
Wear blue in September to show your support.
Follow and tag the DTDS Foundation on social media to help amplify our message.
Donate to support ongoing research and family resources.
Together, We Can Make a Difference
Dystonia may be rare, but the people living with it are not alone. By raising awareness, funding research, and building community, we move closer to better treatments—and one day, a cure.
Learn more about DTDS and dystonia at DTDSFoundation.org.
And visit these organizations for additional resources: