This week's interview is with Alexis Rodriguez, a father of 3, Coca-Cola employee, sound engineer, support group founder, and rare disease patient! (Whew, this man is QUALIFIED!) Alexis has a rare disease called myasthenia gravis (MG), which is a neuromuscular, autoimmune response that attacks nerve impulses on their way to the muscles. This can lead to generalized symptoms, primarily ocular symptoms, or such severe miscommunication between the nervous and muscular systems that a patient is unable to breathe independently. 

Alexis, after being diagnoses 24 years ago, is so well-versed in MG knowledge and advocacy that calling him an expert is an UNDERSTATEMENT! Since he was diagnosed before the amazing thing we know as Google was founded, he quite literally had to hit the books and learn everything there is to know about MG. He founded a support group for MG patients in Atlanta, where he is from, and has received many accolades doing so, including having the largest MG support group in the state of Georgia.

Alexis and I discuss what fatherhood looks like with a rare disease, how much of a game-changer accommodations can be, the reality of geographical advantage when finding specialists, and much more!

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Myasthenia Gravis Foundation of America (MGFA) - https://myasthenia.org

Myasthenia Gravis Support Group for Atlanta, GA - http://www.mggeorgia.org

Alexis Rodriguez's feature in The Gainesville Times - https://www.gainesvilletimes.com/life/life-top-stories/buford-man-raises-awareness-about-rare-disorder/

Alexis and his wife on Patient Worthy - https://patientworthy.com/2017/05/11/caregiver-mg-etc/

Id. d’épisode : 1000569193138

GUID : 750633ad-9bb9-4652-9ea8-8bdd362e2af5

Date de publication : 7/7/2022 à 22:00:27