Vanessa David, a woman from Steinbach, Man., is raising awareness about dystonia during Dystonia Awareness Month. She has been suffering from severe headaches and neck tension for a long time, which eventually led to her diagnosis of cervical dystonia, a rare neurological movement disorder affecting the head, neck, and shoulders. It has been a challenging journey for David, as she had to come to terms with the fact that she will have to manage this condition for the rest of her life. Despite the rarity and incurable nature of the disorder, she remains hopeful and continues to move forward with a positive attitude.
Dr. Sean Udow, a neurologist, explains that cervical dystonia is characterized by abnormal head positions such as head tilt or tremor. It is the most common form of dystonia, although it is still considered rare, with only 30 people per million affected by it in Canada. Overall, there are approximately 50,000 Canadians living with some form of dystonia, and currently, there is no cure for the condition. Treatments available focus on managing symptoms to alleviate discomfort, but researchers are actively working to better understand the disorder and develop more targeted treatments.
One of the challenges with dystonia is that the cause of the condition can be unknown. In the case of cervical dystonia, it is often idiopathic, meaning the cause is unclear. However, there can also be acquired or genetic causes of the disorder. Vanessa David is currently undergoing genetic testing to determine if there is a genetic component to her condition. Despite the uncertainty surrounding the cause of her dystonia, she remains positive and takes each day as it comes, choosing to focus on the good days and embrace them with gratitude.
David finds solace in the fact that she is not alone in her journey with dystonia, even though it may feel isolating due to its rarity. She encourages others facing similar challenges to reach out for support and connect with resources like the Dystonia Medical Research Foundation, where they can find valuable information and assistance. While there may not be a group of people experiencing the same thing at the grocery store, the online community of individuals with dystonia can provide much-needed support and understanding to those living with the disorder.
As Dystonia Awareness Month shines a light on this often misunderstood condition, Vanessa David’s story serves as a reminder of the resilience and strength of individuals living with dystonia. Despite the physical and emotional toll it may take, she remains determined to face each day with a smile and a positive outlook. With ongoing research and efforts to improve treatments, there is hope for a better future for those affected by dystonia. By sharing her story and raising awareness, David is helping to educate others about the challenges and realities of living with this neurological disorder. Through unity and support, individuals with dystonia can find comfort and understanding in the face of uncertainty.
