Down with Dystonia is excited about expanding our reach in 2021. At our 2019 FunDrive, Keith Burke from Merz Neurosciences, and Down with Dystonia Board Member, talked about the typical journey a patient goes through before receiving a dystonia diagnosis:
When the symptoms of dystonia begin, many people think they are just muscle spasms. Eventually, they realize the muscle spasms are happening too often or aren't going away. The person typically goes to several doctors. Some tell them it's a pulled muscle, and other's may tell them the issue is in their head. Most patients see 6-7 doctors and go through innumerable tests before finally receiving a diagnosis of dystonia from a neurologist. And after receiving the diagnosis, they find that it is a condition with some treatments to alleviate the symptoms, but without a cure. Each person must adjust to their "new normal."
What does the "new normal" look like? Our goal is for it to look like a full life with friends, family, school or work, and a medical care team that helps ensure the patient continues to live that full life. For every person living with dystonia to be surrounded by this type of support network, we need to improve awareness about this condition.
And that's where your donations come in! Awareness...our 2021 goal is to increase our awareness campaigns in several ways:
- Online Education and Outreach: people living with dystonia and those who are seeking a diagnosis need the most current information about the condition. This fall, we launched the Down with Dystonia Medical Advisory Board. We will be launching our Patient Advisory Panel in 2021. Together, these teams will help us maintain the most current information on our website and develop a resource network for people living with dystonia.
- Community Awareness: we will increase our activity across all social media channels. This will increase awareness about the condition, reduce stigma, and improve the likelihood the people who are experiencing early symptoms are diagnosed and treated more quickly.
- In-person Education and Awareness Programs - when it is safe to do so, Down with Dystonia will be ready to launch medical professional and community education and awareness programs. We are excited about the programs that have been under development this year, and can't wait to share them!
Will you help us make all of these programs and services reality? Donate today!