Patient communities can be an incredible tool for people to connect with others who share similar medical concerns, and to receive support in the form of patient resources, education, and emotional reassurance. This can be especially important for people with rare genetic conditions, which often have fewer resources and more unknowns. This was the case for Daria Dragicevic, who was diagnosed in her freshman year of college with Dystonia-27, a rare form of a neurological disorder that causes painful, involuntary muscle contractions. This type of dystonia is caused by a different mutation than the majority of dystonia patients; in fact, only six other people have been documented with this specific mutation. Before she became ill, Daria was a healthy 18-year-old college freshman at San Diego State University, a student athlete who played water polo. But, as symptoms emerged, limiting her ability to function independently – as a student, an athlete, an adult – Daria’s life changed profoundly.

At first, the trembling of her hands made it hard to write assignments and participate in sports. Over the course of a few years, she eventually lost the ability to perform basic tasks, such as cutting her food. Daria’s family did their best to support her through her treatments and struggles; however, it was difficult to find resources or a patient community for her. Daria’s slow and steady loss of autonomy and the ever-increasing barrage of medications that never fully managed her symptoms made her life more and more challenging. Eventually, Daria’s care team recommended her for Deep Brain Stimulation (DBS) Surgery, a surgical procedure where a pacemaker-like implant is placed in her brain and electrically stimulates the areas that cause the dystonia symptoms. This procedure is often recommended for patients whose treatment plan cannot effectively manage their symptoms. She was the first patient with Dystonia-27 to undergo this surgery. Recovery from the procedure took time and many adjustments, but thanks to support from her care team of physicians, family, and friends over the past two years, she has regained nearly all of the functions she had previously lost.

“It has been a true lifesaver, and I don't think I would still be here without the research that has supported DBS surgery innovations for genetic dystonia patients like myself,” Daria said.

Daria’s life is still greatly affected by the ups and downs of her condition; however, she has turned her sights to the future, where she hopes to help find a cure for her condition by sharing her story with the research community and becoming a researcher herself. Pursuing a Ph.D. and specializing in speech motor control in the Dystonia and Parkinson's communities, she aspires to focus her future research on neuroengineering devices in movement disorders. She has also joined several organizations to share her story. As an editorial board member for the Dystonia Medical Research Foundation (DMRF), she contributes to their shared mission of supporting advances in dystonia research. She also is a “young adult rare representative” for the National Organization for Rare Disorders, where she shares her journey with legislators to impart the importance of investing in research that advances the understanding of rare medical disorders. These organizations became a second family for Daria as she connected with others living with dystonia, rare disorders, and a passion for advancing science.

Her efforts in advocacy and science led her to the Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Medical Research Program (PRMRP), as she advocated for dystonia funding at a legislative level. Working with DMRF, she wrote letters in support of PRMRP’s continued funding of dystonia with California state legislators. She then served as a consumer reviewer on PRMRP’s peer review panel for dystonia, which was a PRMRP Topic Area in fiscal years 2010 through 2022 and will be offered again in 2023. The work of consumer reviewers like Daria is critical to the success of the PRMRP, enriching the scientific review with their perspectives and a sense of urgency. Her experiences as both advocate and scientist give her a unique perspective and make her an exceptionally valuable consumer reviewer. In the PRMRP, she found a community of researchers and advocates committed to bettering the lives of people in her community and others with rare disorders.

“While [participating in peer review] is quite a bit of work, it has proven to be one of the most engaging and impactful programs I have been asked to be a part of,” she said.

Daria values the commitment of the panels and research community to improve the lives of people with dystonia, and she hopes that the scientific advances of today will lead to a cure in the future.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy or decision.