Kate Stratton - Program Coordinator

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When I was 8 years old, my mom was diagnosed with Familial Partial Lipodystrophy, Type 2. In the early days of her diagnosis, my mom emerged as a beacon of hope for lipodystrophy patients, co-founding Lipodystrophy United and championing the cause as a global patient advocate. Her path wasn't easy—juggling the tasks of patient advocacy with her own battles against the disease, all while being a single mother. Her dedication was a lesson in resilience and purpose, even though, throughout my childhood and teenage years, I struggled to fully comprehend the gravity of her fight. I couldn’t grasp that ‘hungry’ could mean feeling ‘literally starving,’ and feeling ‘tired’ could mean feeling like she had not slept in days. I mistook her experiences with lipodystrophy symptoms for the ordinary, not understanding that for her, and many others, lipodystrophy patients face a relentless struggle to be seen and heard by friends, family, community members, and clinicians.

After years of invaluable, unpaid, work with the lipodystrophy community, my mom took a significant leap forward in her patient advocacy journey with the Chan Zuckerberg Initiative (CZI) as a program manager for the Rare as One Network. This transition had its own set of consequences for Lipodystrophy United. It became apparent that the fight for awareness, community, and education needed fresh energy. Not yet confident enough to take over my mom’s vision for LU, yet inspired by her persistent spirit, I embarked on my own journey of advocacy, driven by a desire to serve those on the margins of society.

I received my Bachelor in Political Science at Lewis and Clark College in 2023. My college years were filled with passion for community building and amplifying marginalized voices. I took on many leadership roles at my college, finding my unique voice. I worked at an immigration and asylum law firm for a year, assisting asylum seekers on their applications and writing their unique (and traumatic) stories in hopes that the judge would deem it too dangerous to go back to their home countries. Like my mom, I knew advocacy and aiding marginalized communities was my passion. My educational journey at Lewis and Clark College, combined with my advocacy experiences, and a soul-searching expedition across the United States and Europe, crystallized my purpose. I discovered that my heart beats strongest for community and authenticity, fueling my resolve to reignite the mission of Lipodystrophy United.

When I finally shook my teenage resentment, I realized my mom's journey and the misconceptions she faced throughout her whole life. This opened my eyes to the profound misunderstandings surrounding lipodystrophy. From speaking with patients and listening to stories, I have realized that every patient’s experience with lipodystrophy is different. Yet, researchers still have not scratched the surface with well-known symptoms of lipodystrophy including body dysmorphia, depression, fatigue, anxiety, and pain. The long road forward is incredibly motivating to me, as our community has a great opportunity to directly and positively impact the lives of patients with lipodystrophy. 

With a clear vision, I am committed to leveraging our collective strength to foster an inclusive lipodystrophy community. I envision a future where Lipodystrophy United stands at the forefront of hope and knowledge for anyone seeking to build community and understand lipodystrophy in the U.S. Through unity, education, and advocacy, we aim to shorten the diagnostic journey, increase awareness, and foster an environment where every voice is heard, and every story is validated.

My mom's journey is one of hope, resilience, and unwavering determination. With the support of an incredible community and a shared belief in our cause, we stand on the brink of transforming the landscape for those affected by lipodystrophy. Together, we can illuminate the path forward, ensuring a future where knowledge, compassion, and support are within every patient's reach.

As a mother, a patient, and the co-founder and President of Lipodystrophy United, my journey represents just one among many who live with Lipodystrophy (LD), each story unique in subtype and severity. Following a 37-year diagnostic odyssey, I was finally diagnosed with Familial Partial Lipodystrophy. Despite sensing something was different about my body and experiencing numerous health issues throughout my life, obtaining a diagnosis was a long and challenging process. My journey revealed the root cause behind years of high cholesterol, diabetes, high blood pressure, and relentless hunger beyond what most could comprehend. Living with LD means facing constant judgment and scrutiny due to my visibly distinct appearance. While some may perceive it as a blessing to lack cellulite, the reality is far from glamorous, marked by daily medications, restricted diets, and a myriad of health complications. Despite the outward appearance of health, the progressive nature of LD brings progressive multi-system disease as well as challenges in being taken seriously by others. However, finding a diagnosis has empowered me to advocate for myself and others affected by LD. While treatments and a cure remain elusive, I am grateful to work alongside inspiring patients, doctors, and researchers worldwide, striving to improve outcomes and pave a smoother path for those navigating the complexities of LD. Despite the hardships, I count myself fortunate for the opportunity to make a difference in the lives of others facing similar challenges. #Lipodystrophy #RareDisease #PatientAdvocacy