Who does not want to have a healthy life? But, if you are diagnosed with a rare disease, what will you dodo? Well, this is where society comes into play; people should educate others about that rare condition so that people living with those diseases do not face many complications. Here, we will be talking about International CDKL5 Awareness Month. Yes, talking about CDKL5, it is a kind of rare and complicated neurodevelopmental condition. If we highlight the key characteristics, people living with this rare condition suffer from developmental challenges, low muscle tone, and early-onset epilepsy. It is also called seizures.
People all over the nation observe the International CDKL5 Awareness Day on 17th June. This month is called International CDKL5 Awareness Month. It was the International Foundation for CDKL5 Research that organized the International CDKL5 Awareness Month for the first time. The main goal of this month is to spread awareness about this disorder among general people. If you are wondering why this day is selected, well, we have explained it below.
Healthy citizens are the greatest asset any country can have.Winston Churchill
It was on 17th June 1997 when Glyn Boltwood, son of Leita died due to this disorder. In order to honor the life of Leita’s son, this day is selected. Well, Leita is one of the founding members of the International Foundation for CDKL5 Research. All of her children are affected by this disorder. Talking about the official ribbon colour of this awareness event, well, this is lime green. People on this awareness month put on a lime green ribbon to spread awareness.
Know More About CDKL5 In This International CDKL5 Awareness Month
Well, one must understand that CDKL5 is a kind of neurodevelopmental condition that is very rare. People have various developmental challenges, muscle tone, and many more. Talking about other common symptoms, includes trouble with swallowing or feeding, sleep disturbances, vision problems, reflux, impaired growth, and many more. Variants in the CDKL5 gene cause this disorder. CDKL5 refers to the cyclin-dependent kinase gene. It is a very vital enzyme that plays a significant role in the function and development of the brain. There are various disease-causing variants that can be seen in the CDKL5 gene. It includes deletions or truncations and missense variants.
Symptoms Of CDKL5 Disorder
The symptoms of CDKL5 disorder are as follows:
— Early-onset epilepsy
— Impaired fine motor skills. The person living with the disorder cannot grasp things properly.
— Impaired gross motor skills. The person having this disorder faces difficulties in walking. #CDKL5AwarenessMonth #CDKL5research #InternationalCDKL5AwarenessMonth #werisebyliftingothers #werbylo