Leukodystrophy is a group of 50+ genetic disorders that affect the central nervous system by disrupting the insulation for signals that travel along our nerve cells, the myelin sheath, or white matter. Leukodystrophy is progressive and can affect muscle tone, hearing, coordination, speech, breathing, swallowing, cognition, and vision.
Leukodystrophy is a lifelong condition. Brades’ Place begins work in-home with a patient with leukodystrophy by spending the much needed time to understand their history, symptom progression, medications, and treatments to identify any medical needs that can be addressed more adequately and working with the existing medical team to resolve these. Palliative care focuses therapies in the home to maintain function, mobility, balance, communication, and other skills. An in-depth sensory assessment gives us new ideas for regulating, calming, and enjoyable activities within the patient’s abilities. Brades’ Place works with siblings and parents to increase resilience, supporting them in meeting the everyday challenges they face with leukodystrophy.
Body Systems Impacted
Courageous Parent Network
The Courageous Parent Network is a fantastic resource for families with medically complex children, leukodystrophy disorders included. Take a look at this beautiful sibling interview exploring a child’s perspective on rare diseases, leukodystrophy included.
They have a comprehensive assortment of guides available, helping parents navigate the unique challenges associated with raising a child with life long illness.
United Leukodystrophy Foundation
The United Leukodystrophy Foundation was founded in 1982 to support research into the causes and prevention of leukodystrophy.
They also provide resources for parents, guiding them through a new diagnosis, hosting annual Family Conferences, and inviting them to get involved in supporting research and spreading awareness.