Glass Half Full with Leslie Krongold, Ed.D.

Tag: rare disease

  • We need innovative solutions when it comes to the rare (disease) community

    We need innovative solutions when it comes to the rare (disease) community

    February 28th is Rare Disease Day. Twenty-five to 30 million Americans live with a rare disease. For more facts and figures related to rare diseases, check the NORD website.

    This podcast episode catches up with Aditi Kantipuly, a physician and advocate, immersed in the rare disease community. As a young girl Aditi learned about a child born with osteogenesis imperfecta – a rare bone condition – and has been captivated ever since. Her journey includes a masters program in public health, a Fulbright scholarship to small villages throughout India, and medical school. Currently she’s exploring the roles of health equity and social immunity.

    For earlier podcast episodes related to rare disease, It’s not that easy being rare, Rare disease and the need for research, and Rare and invisible disability + spoon theory.

    Check this webpage for a list of other podcast programs related to rare disease.

  • Rare and Invisible Disability + Spoon Theory

    Rare and Invisible Disability + Spoon Theory

    Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.

    Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, Insomnia Doodles.

    Earlier podcast episodes have explored Disability Awareness — The D Word and The Pirate as a Disability Action Figure. To learn more about Rare Disease, listen to this podcast episode, It’s Not That Easy Being Rare.

    Sunny is an avid gamer and Virtual Reality enthusiast; stay tuned for a future episode where she shares her love of VR.

  • Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic.

    Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues to write and publish from the safety of her home.

    Lindsey Kizer, in North Carolina, gets to telecommute for her job and tries to maintain self-care routines to avoid narcoleptic flare ups.

    Jay Carr, with myotonic dystrophy in Virginia, spends more time with his teenage son during the lockdown. He also cheers others with his humorous Facebook posts and musical interludes.

    Peter Slobodnik, outside of Sacramento, keeps himself busy by making masks for friends and family while also planning an advocacy bike ride to draw attention to his rare disease, Hereditary Spastic Paraplegia.

    Each of these podcast guests has found their own way to cope with the pandemic.

  • It’s not that easy being RARE…

    It’s not that easy being RARE…

    https://oembed.libsyn.com/embed?item_id=8800367

    February 28 is International Rare Disease Day. There are over 6,000 rare diseases or disorders with 80% having genetic origins. Global events are planned to draw attention to the need for medical research.

    This brief, light-hearted podcast episode shares a few less critical aspects to having a rare disease. For a deeper dive, check out last year’s Rare Disease podcast episode.

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