Being diagnosed with Krabbe disease is difficult and daunting. Perhaps you’ve experienced a complicated journey of symptoms and misdiagnoses or it’s possible your child was diagnosed by the newborn screening test. Whatever your personal story, KrabbeConnect understands the diagnostic journey, the fight for answers, and the need to just connect with someone who’s walked in your shoes.
Let us ease this burden by connecting you with an individual whose kind, non-judgmental, easy to talk to and who’s lived the journey with Krabbe disease. His name is Kevin Cushman. Kevin is the parent of Collin Cushman, diagnosed with Krabbe disease at 13 months of age. Check out his story here.
Kevin, as the Outreach Coordinator can aid patients and caregivers with his journey, offer information on lessons he learned, provide you with contact information to the leading Krabbe disease clinicians, as well as, engage in meaningful conversations about:
- The initial shock; never hearing of the disease until now
- Current research being done on Krabbe disease
- Medical equipment
- Impact of the disease on a family
Our hope is Kevin’s insights will assist you in having informed and purposeful conversations with your healthcare provider or aid in uncovering useful resources in your area. Kevin aims to create a safe space in which you can interact and seek support knowing that you’re interacting with someone who has gone through a similar experience. Any conversations with Kevin should not be considered medical advice.