To kick off rare disease month, author Patti M. Hall joins host Kira Dineen to discuss her memoir Loving Large which chronicles her son’s rare disease diagnostic odyssey. Her life was pitched into an abyss of uncertainty when a golf ball–sized tumour was discovered in her teenage son’s head and he was diagnosed with gigantism, a disease of both legend and stigma. After scrambling to access a handful of medical experts in the field, Patti learned that her son could grow uncontrollably, his mobility could be permanently limited, and his life could be cut short without timely and aggressive treatment. Patti’s attention shifted fully to her son, away from her relationships as well as her own career and health. Her new normal sees her step into a dozen additional roles, including nurse, researcher, advocate, risk assessor, and promise maker, while she struggles and fails to rebuild her life as a recently divorced woman. When the unthinkable strikes, parents Love LARGE. Now, Patti serves as an advocate for the rare disease community by serving as a member of the Board of Directors for AcromegalyCanada.

Enter our giveaway here to win your own copy of Loving Large! For additional entries head over to our Instagram post.

On This Episode We Discuss:

Diagnostic Odyssey “From sore knees to a brain tumor”

Symptoms of gigantism

Gigantism vs Acromegaly

Joining the rare disease community

Mother son relationship through diagnosis and treatments

Filtering medical information for rare disease kids

Impact of a rare disease on siblings

Genetic research for gigantism

Sequel to Loving Large

Learn more about Patti Hall on her website and stay updated with her writing and advocacy on her Instagram. Her podcast, “Reframe your Life” addresses issues relevant to women beyond career building and child-rearing.

Don’t forget to enter our giveaway for a copy of Loving Large here. You can also get extra entries through our Instagram!

Continue our rare disease month celebrations with the next new episode of DNA Today on February 19th! You can also hear 20+ rare disease interviews on previous episodes of the show listed here.

New episodes are released on the first and third Friday of the month. In the meantime, you can binge over 130 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”.

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNApodcast.com. Questions/inquiries can be sent to [email protected].