Patients & Caregivers
Being diagnosed with a rare disease is terrifying and difficult, yet, armed with the right information, KrabbeConnect hopes to make the journey slightly less stressful.
The information provided here is designed to help patients and caregivers understand what they can expect when a loved one is diagnosed with Krabbe disease. KrabbeConnect is committed to providing the necessary information to empower patients and caregivers to seek care that is right for them. In doing so, we have compiled helpful information you may need in an easy-to-read format that allows you to scan different sections at your own pace and quickly refer to specific content at any time.
Understanding Krabbe disease
Understanding the disease is an important first step. In this section you will learn how Krabbe disease is characterized, the incidence rate, and, fully understand the autosomal recessive inheritanceA pattern of inheritance whereby both parents must be a carrier for the disease in order to have a child with the disorder. Even when both parents are carriers for the disorder, there is a 1 in 4 cha pattern of the disease.
Infantile, Late-Onset
The most common form of Krabbe disease is Infantile Onset, usually beginning before the age of 1. In a relatively small number of cases, Krabbe disease does not appear until later in childhood, adolescence, or even adulthood, and, is classified as Late-Onset Krabbe. To learn more about the different forms and symptoms associated with the disease check-out InfantileLate-Onset Krabbe disease.
Testing, Treatment, and Clinical Care
The testing, treatment, and clinical care of a Krabbe patient is unique. Patients often face a long journey from diagnosis to treatment; thus, it’s KrabbeConnect’s goal to be transparent, providing the most current trends in treatment and care for Krabbe disease.
Connect with an Expert
Krabbe disease is rare, affecting approximately 1 in every 100,000 births, yet, a disease does not feel “rare” when it affects you or a loved one. KrabbeConnect has partnered with the leading clinical experts in Krabbe disease and we want to connect with them. We encourage you to reach out to each expert to learn more about their clinical expertise in Krabbe disease.