AHC is a complex, ultra-rare neurological disease. The majority of cases (approx. 80%) are caused by mutations in the gene ATP1a3 (though there are other potential genetic root causes, which Cure AHC funds active research to discover/conﬁrm) The hallmark of this disease is bouts of temporary paralysis that alternate from one side of the body to the other (or sometimes engulf the entire body), lasting anywhere from minutes to days at a time.
AHC IS LIKE HAVING 7 DISEASES AT ONCE:
- Paralysis like Stroke
- Seizures and spells of reduced consciousness like Epilepsy
- (true epilepsy in >50% of cases)
- (high risk of SUDEP or rapid severe permanent deterioration)
- Low muscle tone like Cerebral Palsy
- (and complications like the inability to breathe and swallow properly)
- Movement problems like Parkinson’s
- Behavioral issues like ADHD
- Learning challenges like Autism
- Neurodegeneration like Alzheimer’s
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.