At PANTHERx we often have the pleasure of getting to know not only our patients but also their families. Parents, children, and siblings can serve as caregivers and support to their loved ones who are living with rare conditions. Sometimes though our RxARECARE® teams get to know families because these genetic diseases effect multiple members of the family who then share the roles of patient, caregiver, support system, and inspiration.
Dale has been living with Primary Periodic Paralysis (PPP) for over eight decades, but he has not let it slow him down. As a young man, Dale worked around his “weak spells” finding and excelling at jobs that began later in the day, so the morning effects of his PPP had time to wear off. With a zeal for travel, Dale and his wife have driven tens of thousands of miles around the country to visit friends and see new sites.
Now a great-grandfather, Dale is not the only person in his family living with PPP. Dale’s daughter Kim and his grandson Geoff share his diagnosis. Their family is honest about the struggles of growing up and living with familial PPP but they find comradery in their shared experiences.
PANTHERx, the exclusive provider of Dale, Kim, and Geoff’s medication, is proud to serve three generations of their extraordinary family. We provide individualized attention, and comprehensive medication coordination so Dale can plan his next road trip, Kim can focus on her advocacy initiatives, and Geoff can play with his young son.
Over the course of his life Dale has seen the rare disease community and the rare pharmaceutical industry form and grow. He and his family attended the first Primary Periodic Paralysis conference and have found joy in connecting with people who share their disease and in creating awareness around the many forms of PPP.
Dale’s full video and profile can be found on our Primary Periodic Paralysis (PPP) Rare Disorders page.
If you would like to be considered for a PANTHERx Patient Profile please contact Ally Ayoob, Marketing Specialist, at firstname.lastname@example.org.