Lauren
About Me
Lauren spends every day making a conscious effort to live in the present. Although her balance has been in decline, she still finds ways to do the things that make her happiest, like going on bike rides and spending time with her three nephews. Rather than letting her ARSACS diagnosis stop her, she has chosen to let it empower her as she continues to live her life to the fullest.
Diagnostic Journey
At age 26, while living with stage 2 Lyme disease, Lauren began to notice a progressive decline in her balance. In an effort to advocate for herself, she met with various doctors. She was unable to find a definitive diagnosis until she finally found a neurologist who ran a genetic panel to test for genetic diseases. Fortunately, the gene that contains the mutation for ARSACS was included in that test, and, at age 28, Lauren finally found answers and was officially diagnosed with ARSACS.
Message to the Community
Lauren urges others who may be struggling with ARSACS to utilize their support systems and not let a daunting diagnosis get the best of them. She wants people to know that life continues with ARSACS and that life can still be full of joy, positivity, movement, and happiness. She highly recommends joining Facebook groups and finding others who share the same diagnosis, so you know you are not alone. While everyone experiences the disease differently, it is entirely possible to learn from and support one another on your individual journeys.
Message to Those Unfamiliar with ARSACS
Lauren reflects on the intense hardships of living in the unknown. The period before receiving her diagnosis was particularly difficult, as ARSACS can resemble other conditions like Multiple Sclerosis or Parkinson's disease. However, ARSACS is unique and should be treated as such. She experiences her own specific symptoms, particularly shakiness and feeling unsteady. Lauren believes it is incredibly important to highlight the profound impact that general awareness can have for rare diseases like ARSACS.
Hopes for the Future of ARSACS
By sharing her story, Lauren hopes to guide those who are experiencing similar symptoms toward their next steps and necessary support. Additionally, she hopes everyone becomes knowledgeable about ARSACS, not just those directly impacted by the diagnosis. Through this increased awareness, she hopes for more funding and research to be dedicated to the disease so that a cure can be found one day. Above all, she wants people to know that there is still hope, and she chooses to find it every single day.