Today we celebrate international AHC day all over the world. Alternating Hemiplegia of Childhood is a rare neurological disorder. In 1971 the first article about AHC by Verret and Steele was published. In 1993 only 30 AHC patients had been discovered but today about 850 patients have been diagnosed and that number is crowing fast.
On 18th of January 2012 scientists at Duke University discovered the gene mutation that causes AHC in the gene ATP1A3.
Therefore the AHC International Alliance decided to name this day INTERNATIONAL AHC DAY.
Now about 80% of AHC patients have a confirmation of mutation in this gene.
AHC is often referred to as the most complex neurological disorder know to man because the AHC champions that fight this disorder have all the symptoms of all other neurological diseases.
It should be extremely challenging and exciting for researchers to study this disease because other much more common diseases like Parkinson´s could benefit from those research.
What holds back research is funding, pharmaceutical companies have no interest in researching AHC because there is not much profit to be made from such a small number of patients.
AHC champions suffer episodes of paralysis that can last from minutes up to weeks. They are mentally challenged, most have Dystonia, Nystagmus, ADHD, autism, have difficulty walking and controlling fine movements. On top of everything about 60-70% of our AHC champions also have epilepsy seizures.
Like you can imagine after reading about all these symptoms our kids need care 24/7 and that puts a lot of strain on the families.
Today on International AHC Day we will be opening a new website www.humantimebombs.com where you can watch the documentary about AHC in 10 languages. This documentary has been shown in many countries and has received fantastic reviews from both parents and professionals.
Human Timebombs took 2.5 years in the making and is the foster child of filmmaker Agusta Fanney Snorradóttir and producer Sigurdur Holmar Johannesson.
The film explains AHC in a simple manner as well as shining a light on the difficulties rare diseases face in the world.
I encourage you to watch the film, its 40 minutes well spent.
Happy international AHC Day 🙂
Sigurdur Holmar Johannesson
AHC Federation of Europe