With my story, I aim to foster a sense of community and understanding, showing that there is hope and that life can improve even with such a challenging condition.
Most people do not realize how much energy and effort it takes just to perform everyday activities. When you’re constantly feeling off-balance, dizzy, and nauseated, simple tasks like walking and resting become incredibly challenging. And especially so during severe episodes.
Finding a community of others going through the same struggles was a profound relief.
In the shared experiences, I felt an immense sense of validation and comfort knowing that I was not alone. The support group provided practical tips and emotional support, which helped me navigate my symptoms and gave me hope during my darkest moments. I finally felt understood and less isolated in my journey. It has given me a new perspective on life, making me more grateful for the small things.
I want to emphasize the importance of proper diagnosis and the value of patient advocacy. Things have improved significantly since my initial diagnosis. With the right treatment and support, my symptoms have reduced to a manageable level. I’ve been able to return to my normal activities. I’ve even taken up dancing again, which has brought me immense joy.
To anyone struggling with MdDS or any chronic illness, know that you are not alone. It’s important to advocate for yourself, seek out supportive communities, and never give up hope. Surround yourself with people who understand and support you, and take things one day at a time. You are stronger than you think, and your story can inspire and help others.
Yoreim Virella
Age at onset: 30s
Non-motion related MdDS
This year, MdDS Awareness Month has been about making sure MdDS patients are seen and heard. Over a dozen told they stories in their own voices and proved that unseen illness doesn’t have to obscure or define you. Tomorrow we will share one more “Face of MdDS.” If you missed any, you can find all the Faces of MdDS stories on mddsfoundation.org.
Thank you. This group has gotten me thru knowing that I am not alone. Never have been on remission but hopeful.
Same here Edna, not in remission yet but having this great support group has been incredibly helpful!