In this week’s episode of The UpBeat Podcast powered by CoachArt, our Executive Director and host Greg sits down with actress Madison McLaughlin to discuss her family’s journey with an extremely rare chronic illness. Two of Madison’s three younger sisters have been diagnosed with HBSL (full name: hypomyelination with brainstem and spinal cord involvement and leg spasticity), which affects a person’s brain and spinal cord and impairs motor function.
Dealing with any chronic illness is challenging, but that challenge can be compounded by the isolation and uncertainty of a rare diagnosis. There are only 19 official diagnoses of HBSL throughout the world, including Madison’s sisters.
At age 11, Madison made her way to Los Angeles to pursue a career in acting, which led to roles on Chicago PD, Supernatural, and Arrow. Now 24, she divides her time between her acting career and her advocacy for causes that are important to her. She joins the UpBeat to share her family’s search for a diagnosis and their experience living with such a rare condition.
Madison and her family have been happy members of CoachArt and have relied on other non-profit organizations for assistance and support, which can be very difficult to find when there are so few others going through the same fight with a particular condition.
One of their most important communities is Global Genes a large online resource hub for people impacted by rare diseases. Their goal is to “empower patients, build communities & drive forward momentum for rare disease globally.”
Another important organization for families dealing with rare diagnoses is NORD — the National Organization for Rare Disorders. The large patient advocacy organization spreads a wide reach with its 300+ member organizations and does amazing work in linking together those looking for a common community.
The Everylife Foundation is an inspiring group whose main purpose is to “Close the innovation gap for the 93% of rare diseases that have no FDA-approved treatment” by affecting public policy based on current science. They’ve lobbied for government changes at the state and federal levels and have helped enact important legislation to assist the fight against rare illnesses.
Do you know other helpful resources for families impacted by a rare chronic illness? Have some questions? Head on over to The UpBeat private Facebook group!