February 29 is Rare Disease Day Download

29:16 Download February 12th

Romy Braunstein, a Rare Disease patient, advocate and a founder of GettingUp.org discusses the over 10,000 rare diseases that impact over 35 million worldwide.    A ‘rare’ disease affects fewer than 1 in 2,000 people, they can be genetic or develop later in life for an unknown reason, although trauma can trigger symptoms.   Romy encourages everyone to pay attention to the adult-onset symptoms such as blurred vision, muscle weakness and unexplained falls –  all could be a warning sign of an autoimmune or other disease.  She explained these fairly common symptoms often overlap, so initial misdiagnosis is common.   In addition, symptoms differ not only from disease to disease, but also from patient-to-patient suffering from the same disease so getting an accurate diagnosis can take up to eight years.

Romy notes that symptoms come and go so patients need to be vigilant and advocates for themselves, keeping track of symptoms, and asking for testing.  She warns us about ‘medical gaslighting’ – symptoms being dismissed or given being passed off as part of aging or even psychological.

Rare Disease Day is February 29 in 2024.  This global movement works for awareness, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Learn more at GettingUp.org or RareDiseaseDay.org

Podcasts you may like

Andie Summers Show Podcast

Weekday mornings 5:30-10am with Andie Summers, Jeff Kurkjian, Donnie and Shannon including conversation and interviews you might have missed. Find where you joined the show or maybe your favorite segment!

Play Latest (December 4th)

3665 episodes

Do What You Love

I’m Jeff Kurkjian. I’ve hosted morning radio since I was in college at Syracuse University, a stop in beautiful Cleveland, Ohio then Las Vegas, Nevada and now, I live in […]

Play Latest (May 9th)

42 episodes

Theme Parks and Rec Podcast

Theme park enthusiasts Rachel and Micaela talk all things fun on this podcast based out of Central Florida! With their connections and passion for rides, food, character experiences, and adventure, […]

Play Latest (January 19th, 2023)

168 episodes

PG: Parental Guidance (Needed)

Roxanne and special guests share parenting mishaps and milestones. With crazy schedules for parents and kids and the added distraction of tech everywhere you turn, they are less dishing out […]

Play Latest (October 6th, 2023)

180 episodes