HANNAH'S LUPUS JOURNEY
As a teenager, Hannah dove into life headfirst. She loved poetry, history, philosophy, and searching for answers to complex questions. She found solace in outdoor adventure - in backpacking, ocean kayaking, and skiing down black diamonds as fast as she could. She aspired to be a film director and was eager to grow up. When she first experienced mysterious joint pain and fatigue around age 15, she wondered why things that once felt easy suddenly seemed so hard. It wasn’t until years later that she learned she had lupus. At age 19, Hannah developed a headache. It was so painful she had difficulty eating and sleeping and had to make the difficult decision to temporarily leave college. Determined to get better, she went to many doctors, some who dismissed her pain and others who believed her but were unable to provide answers. Finally, after many specialists, she learned the cause of the headache was excess spinal fluid pressing against her optic nerves. The doctors suggested this was “idiopathic” or without a known cause, but she demanded more tests. She still remembers receiving her lab results the day her life changed and the section that was marked red for “abnormal” with the note “indicates lupus” attached.
Upon receiving her diagnosis, the initial relief of knowing what was wrong was soon replaced with the fear of all the uncertainty ahead. Words used to describe lupus like chronic, incurable, misunderstood, organ damage, and limited treatments terrified her. She wondered what kind of life she could have with a disease like this. Would it look anything like the one she envisioned for herself?
A week after diagnosis, Hannah and her family attended the Lupus Foundation of Northern California’s New Patient Education class. She left the class feeling empowered and a lot less scared, equipped with the information and resources to not only understand how lupus was treated, but how to live with lupus and still have a full life. LFNC’s Living Well with Lupus programs helped her through her good days as she returned to school and directed her first short films. They also helped her through difficult times, like when she was hospitalized for kidney involvement and underwent chemotherapy. Meeting other patients through the Lupus Foundation of Northern California and seeing that they could have lupus and still follow their dreams despite hardships made her feel as though she could, too.
Now Hannah is 26 years old with her lupus in remission and working in politics, determined to use the power of her own story to inspire others to action. She and her family continue to be proud supporters of the Lupus Foundation of Northern California, an organization that has always been there for Hannah, reminding her she is not alone and that there are people rooting for her.