Do you ever feel like you are wearing a mask of grit and determination and yet behind closed doors suffer unbearable hardships? Beth Nguyen, Co-Founder of Rare STRIDES and Rare Wish shares her story with us below in how it all got started.
It took courage to remove my “mask” and speak out even though it meant sharing vulnerability because I was at the height of my nursing career when symptoms first began. Around 2013 my journey into rare began and plunged me and my loved ones into years battling hardships I never knew existed in community or healthcare. At the same time, I found myself having to make tremendous sacrifices fighting for equality. I ended up taking on multiple volunteer roles speaking with more rare families and leaders, researching to gather evidence-based resources, and literally helped build a network of support from the ground up while advocating for positive changes. While all this was taking place, I continued struggling against the ticking time clock of my rare disease while taking care of my family, researching, juggling multiple medical appointments, tests, and battling scary symptoms. The struggle is real!
Over the years I discovered that I have more than one rare disease. I have Syringomyelia, Tarlov Cyst Disease, Intracranial Hypertension, Autonomic Dysfunction, Diastolic Heart Failure, Pulmonary Hypertension Type 2, and a rare c-spine tumor to name a few. If fighting for change was easy everyone would do it. I was called into service as a rare leader through my faith journey. Years of hardships and complex challenges I had to navigate as a nurse and rare patient grew into valuable experiences that are now a powerful testimony. My personal rare journey gave me a powerful perspective and opened my eyes to the unique hardships faced by our community.
Living with a rare disease is complex and challenging on multiple levels. Fighting for positive change on behalf of your loved one or our rare community can be difficult and discouraging. I want you to know that you are visible and sharing your journey is important! Do not let anyone silence your voice or minimize your experience.
Serving the rare community is my passion and it is truly an honor to give back. My rare journey was a blessing in disguise that helped open doors for change, so I have no regrets. When you need encouragement during difficult times, take strength in the knowledge you are not alone. United in rare we have hope and give each other renewed strength and purpose to fight back against inequality and keep moving forward to positively change the future!
Rare STRIDES and Rare Wish are united in our promise and vision to give back to the rare community by granting rare wishes and funding clinical programs and solutions that improve quality of life for rare families for many years to come! Together we can make rare visible in healthcare and restore quality of life for those with rare diseases while giving back to ensure a bright sustainable future for the community we serve!
January Blog Post by Beth Nguyen, RN
Founder Rare Wish
Co-Founder Rare STRIDES
Chairperson Georgia’s Rare Disease Advisory Council
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