Living through a lengthy diagnostic odyssey is unfortunately very common for rare disease patients. Madison “Maddie” Shaw’s journey to diagnosis took place over an intense and frustrating two and a half years when she was 12 and included acute infections, multiple hospitalizations and almost two dozen befuddled doctors. Despite extensive medical attention, it took Maddie’s mom noticing a poster in an airport that finally led to a proper diagnosis of Primary Immune Deficiency disease (PI), specifically Common Variable Immune Deficiency (CVID), along with other autoimmune conditions. Navigating this diagnosis and having to convince doctors and teachers that she was really sick led Maddie to advocacy as a means of transforming her anger and fear into purpose.
Soon after her diagnosis, with the help of a supportive community of family, friends and classmates, Maddie created Maddie’s Herd with the aim of cultivating “zeal” that inspires and empowers people affected by Primary Immune Deficiency disorders. Maddie’s Herd raises awareness and research funds for the Immune Deficiency Foundation (IDF), a NORD Member Organization. Through events like Pie Fight for PI, Zumba nights, pocketbook parties and more, Maddie’s Herd has raised thousands of dollars for the foundation.
Although the funds raised for IDF have been remarkable, according to Maddie, the true measure of success has been hearing from other patients and families who
learned they are not alone. Maddie recalls receiving an email from a mom after an interview with a local news station. “She was able to show her son a map of where he lives and where I live, and that he is not a solo zebra but part of a herd, Maddie’s Herd.”
Today, there is still no cure for CVID, but there is hope. In addition to Maddie’s work in fundraising and raising awareness, she has represented PI and other rare disease patients twice on Capitol Hill. Maddie is a dedicated Rare Disease Day supporter, having spoken at a number of Rare Disease Day events. In 2016, she was a featured speaker during NORD’s annual Rare Diseases and Orphan Products Breakthrough Summit.
Having grown up with a rare disease diagnosis, it’s no surprise that Maddie is entering adulthood full steam ahead, with determination and hope for the future. She looks forward to her undergraduate studies at Emerson College and majoring in political communications. She recognizes that it is hard to be sick but is grateful for the opportunities that she has encountered through her advocacy work. Maddie refuses to be defined by her illness, and says,“This life of mine inspires a new aim of living a life with my illness, not as my illness.”
NORD is honored to present Madison Shaw with a 2019 Rare Impact Award.
Join us during NORD’s annual Rare Impact Awards ceremony, presented as part
of the 2019 Living Rare, Living Stronger Patient & Family Forum in Houston, TX.
