Fighting a Rare Disease With Rare Determination
When therapy was approved to treat Jodie’s hypokalemic periodic paralysis, Diplomat was there to help.
“[Diplomat] worked with the foundation on the copay. Taking that pressure off is a big deal, because going through a major illness is difficult. I don’t have to worry about [the small details] with Diplomat.”
— Jodie, Baseball Player & Diplomat Patient
Jodie is used to putting in the time to create his own luck.
He grew up in a family with two religious denominations: “Baptist and baseball.” As a fan and a workaholic, he spent years playing the game and took that talent to college on a scholarship — all while ignoring the signs of a rare and serious disease.
He mistook muscle spasms and twitches as side effects of intense training.
But his symptoms progressively got worse. A year into college, he started to have episodes that would leave him unconscious and with a lot of questions.
“When I was on my baseball scholarship, I just started having drop attacks. I was diagnosed with everything from epilepsy to narcolepsy. Everything that ended in ‘-epsy,’ I had it.”
After many treatments and specialist consultations, the diagnosis finally came: hypokalemic periodic paralysis — a rare genetic disease that is very hard to treat.
To make matters worse, Jodie’s diagnosis came with an even more rare genetic mutation in a calcium gene, which rendered many treatments ineffective.
But Jodie, after living with the symptoms all his life, didn’t let the diagnosis faze him. He leaned on his faith and natural positivity to keep in good spirits.
“I’ve been very fortunate that God has blessed me with a sense of humor.”
Still, he suffered side effects that cut into his family time and caused him to miss events. His episodes would often happen in the afternoon, so he only felt comfortable going to morning activities.
It all changed when the FDA approved a drug developed specifically to treat hypokalemic periodic paralysis. The specialty medication, dispensed only through Diplomat, gave him back the time and freedom he hadn’t had in decades.
Instead of multiple attacks per day, Jodie’s attacks became less frequent, enabling him to do things like attend his mother’s 88th birthday party and throw water balloons with his daughter.
Jodie said he was grateful for reliable shipments of treatment at his door, allowing him to live a fuller life. He said he appreciated Diplomat’s personal care and the services that come with it.
“I have the drug in my hand. You [at Diplomat] all have worked with the foundation on the copay. … The communication that you all have provided has been flawless.”
His only complaint: “Where were you five years ago?”
With his newfound freedom, Jodie became more positive.
“I don’t look at the glass as half-full or half-empty. I just look at it as ‘there’s some water.’ And if it needs to have more water in it, I’m going to go find some water.”