Speak with people who understandWhen you have a rare genetic condition like Primary Periodic Paralysis (PPP), it can be difficult finding support and guidance. You are not alone. PPP Mentor Connect can put you in touch with a person taking KEVEYIS who may understand what you’re going through and who can share their medical journey and personal experience with you. Whether you are an adult with PPP or an adult caregiver of an adult with PPP, you can connect with an understanding mentor.
John didn’t sit back, he took control of his PPP journey
Careful research and conversations with her doctor led Kim to KEVEYIS
Advocating for herself: Janine’s efforts led to answers
Persistence paid off for Paul
Eventually one of Paul’s doctors determined that complications resulting from a condition that Paul knew about since his youth, called Ehlers-Danlos Syndrome, was causing some of his episodes of paralysis. Those episodes could be managed by relieving neck compression. So, that meant that the others caused by HypoPP required treatment. It all finally made sense. Paul remembered hearing about KEVEYIS at the PPA conference, so he brought it up to his doctor, who agreed that KEVEYIS seemed to be an appropriate treatment option for him. Now, with the help of his doctor, Paul is able to manage his PPP by taking KEVEYIS and avoiding triggers whenever possible. He also relies on his service dog Koira, who can warn him of PPP episodes 15-30 minutes before they happen.