one day at a time

Diagnosed and reported in less than 70 cases worldwide ( that's equivalent to viewing 1 pixel from all the images I have posted this year ) Ring chromosome 20 syndrome is a rare genetic condition, which is associated with a type of epilepsy that is complex, often drug resistant and hard to treat. In 2004 there were only six countries who had physicians with an interest in Ring 20.

As a genetic condition, each case is unique, what works for one patient will not necessarily work for another, and so patients are frequently exposed to multiple antiepileptic drugs and treatments in order to try and control the symptoms.

The symptoms can show at any point from birth to about 17 years. Seizures associated with RC20 syndrome are often complex partial and reported as episodes of altered consciousness with staring, oral automatisms, unspecified automatic behavior, focal motor symptoms and/or head turning. Subtle nocturnal behavioral changes such as stretching, rubbing, turning that resemble arousal, subtle nocturnal seizures (SNS), and subtle nocturnal frontal lobe seizures (SNFL) have also been reported in studies of RC20 patients. - r20.org

Diagnoses of the condition can only be made via a genetic test, so there maybe more people with the condition than the numbers currently reported.

I've posted this today, to help raise awareness of Ring Chromosome 20, if 100 people view today's post and get as far as reading this, then that will be 100 more people who are a little more knowledgeable, and maybe, must maybe, might know someone with hard to treat epilepsy (there are 50 million people with epilepsy worldwide), who are unaware of this condition.

If you want to know more:
rarechromo.org or ring20.org

Thanks for following / subscribing to my Blip journey, especially those who picked me up on the 'L' plates, and stayed with me - I'm not the best at at commenting, so I really appreciate your feedback and viewings.

I am not sure where the path now leads, 365 was the target. Sweatie, you must owe me a bottle of fizz?! However, as long as I have the time, am able to progress my knowledge and refine my style, I will probably keep on posting.

Who knows what the future holds - one day at a time