How podcasting can build and gather information and motivate change within communities affected by rare medical diseases
Creating podcasts within communities affected by a particular disease, and initiating the discussion between parents/caregivers/patients in an interview format, is a progressive way to gather novel and unique information regarding the reality of living with a particular disease. Listeners can now hear how the medications and treatments prescribed or recommended, are actually experienced by patients/caregivers/parents. By listening to the voices of the patient population for which these medications and treatments were designed to help, particularly in an audio format with no visual distractions, much information can be gleaned that could be quite valuable in developing more specific, targeted treatments and medications.
The brave and articulate Renée L’Heureux talks to me about her experience of a TSC diagnosis at 39 weeks of pregnancy and the multitude of experiences and feelings that are a part of this particular TSC journey with her son Aaden, who at 10, is non-verbal.
I was blown away by Renee’s steady voice throughout, and her ability to continually make choices that reflect much maturity and strength in order to provide the best care for her son, despite her life circumstances. I truly hope other TSC Moms will give it a listen as it is much relevant for those just receiving a TSC diagnosis as well as for those more seasoned vets among us.
There is a lot of information to unpack and some highlights to listen for in particular are her experience with Vigabatrin and Infantile Spasms, the experience of getting approval and funding for brain surgery and the hurdles and barriers involved, ADHD symptoms, as well as impact on family, siblings, working with the school system to advocate for and support a child who is non-verbal, and much much more!
Renee hails from Winnipeg, Alberta but currently lives in Airdrie, Alberta.She discusses some of the differences in the Canadian healthcare system and education system. In light of our rather chaotic US politics lately, listeners take heed.Tune in this coming week for an episode with a school psychologist as well as a woman with TSC running Marine Corp Marathon for Team TSC, and on the ketogenic diet for seizure control… with lots more to come!