What is living with AHC like? Well, it is a very complex disease. We have found describing it in terms of more familiar diseases to be helpful. Alternating Hemiplegia of Childhood creates
- Movement problems like Cerebral Palsy
- Learning challenges like autism
- Behavioral issues like ADHD
- True Epilepsy in at least 50% of cases
- Bouts of temporary paralysis that last for minutes to days at a time
- Currently incurable and essentially untreatable
- In other words…very debilitating and heartbreaking!
There is a spectrum of severity, with ranges from fully wheelchair-bound individuals to those who are able to live semi-independently. We call those living with AHC “Champions”, for they triumph over the significant limitations of their disease in amazing ways! Despite these challenges, AHC Champions are very determined & good spirited children& adults. Their parents are truly exceptional people, managing a dizzying array of medical appointments, therapists, case workers, teachers, medical equipment providers, and other caregivers.
Cure AHC is actively involved in finding ways to empower Alternating Hemiplegia of Childhood sufferers & their families to deal with the complexities of living with AHC.
Please visit our Family Support Blog for insight and information on living with AHC.