Stories of CDKL5

CDKL5 stories
I am Kiley's mom Tina. Kiley was born in June of 06. In December of 06, she received a diagnosis of infantile spasms, etiology unknown. We went thriugh Acth, keppra, klonopin, depakote, vigabitrin, sabril, ketogenic diet and nothing controlled the se...
CDKL5 stories
My great granddaughter, Eaysa Rae, has CDKL5.  She is so beautiful and I want to find out as much as I can to help her and our family understand what we can do to help her enjoy her life and be happy. She has a great supportive family and her da...
CDKL5 stories
My name is Harper Elle Howard, but you can call me Harperpotamus.  Although my experience was only 5 years long, my story lives on through the millions of people who suffer from epilepsy, recurrent seizures, and the rare disorder, CDKL5.    &...

Tell your story and help others

Tell my story

View more

CDKL5 forum


Ask a question and get answers from other users.

Ask a question

View more

Statistics of CDKL5

1 people with CDKL5 have taken the SF36 survey. Mean of CDKL5 is 1165 points (32 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

View more

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map


Join the map