This is my page of good news stories, when you discover you or a family member has KLS and the episodes are frequent or long (if is different in every case) then you want to know whether it is really true - whether one day, we will leave KLS behind and stop wondering when the next episode will happen and be able to make real plans for the future.
So this page contains news to inspire people who are living with KLS that it will get better, the episodes will end or become less frequent. These statements are from real people who have lived with KLS, their comments have been taken from their facebook timelines, from comments/emails sent to us and which are being shared to help us all have hope for the future.
I would love to see Jake's name here, as we achieve each new goal, but equally I would love to hear from more people with KLS who have achieved a promising gap between episodes, and are happy to share their story with others and even allow other families to contact them for more details. If you know of someone who we should add please let us know.
Congratulations to the following people and families.
Lyn from Texas shared this on a facebook group. "It has been awhile since I posted on this page, so I wanted to give a word of encouragement to those of you suffering from KLS (and your loved ones). My KLS started in 1971--years before even some of the best neurologists had heard of it. I had just graduated from high school, and it began right after a concussion. I missed 2-5 weeks of school every semester throughout college and law school. I was hospitalized on more than one occasion, and the doctors ran every test imaginable, including every kind of EEG and a spinal tap. I saw internists, allergists, neurologists, and psychiatrists. No one could diagnose my problem. During each episode I was terrified that I would be stuck like that for the rest of my life; it terrified my parents and me, but we always trusted God throughout the ordeal. Then one day in 1981, it ended. Thanks to an incredibly supportive family, amazing friends and classmates, and understanding professors and dean, I made it through ten difficult years. But I continued to live in fear that any day I might have another episode. We still had no idea what had been causing these episodes. Years, decades went by, then one evening my mom saw a program on TV, and the mystery was solved. I had a textbook case of KLS, but the most exciting news was that it wouldn't return, and it hasn't. I was 18 years old when the episodes started, and 28 when they ended. I am now 62 years old, married with two children and two grandkids. I practiced law, and now I am a teacher. I just want you all to know that you can have a long, happy, fulfilling life; that KLS won't rob you of these things!" - shared September 2015.
Keith shared the news in March 2014 that it ws 6 years since his last episode. :) We love hearing news like that!
Megan from the US posted on the 29th March 2014, "Today marks 1 year since my last KLS episode. Never thought I'd be so happy to reach this milestone!"
Megan was 27 when she posted this KLS started for her age 12-13, and prior to her last episode she had a six year gap.
Anne messaged me - "Billy is fifteen years free of KLS, last episode at 18." He is now married, has a good job and a toddler. (February 2013)
Carole P (UK) - "I had KLS from the age of 13 till about 27, I am now 39" (2013)
"My son Adam suffers with KLS. Although we believe Adam is outgrowing this syndrome as he is now 25 and it's been 2 years since his last episode. Adam will graduate with his Baccalaureate degree in Kinesiology in December after 7 1/2 years in school! Many semesters with medical withdrawals, but he ever gave up! He is now engaged and getting married.. His fiancé has been through episodes with him and never wavered. My message now is never give up. It has been a rough 10 years, but we have grown stronger I believe." said Cindy in Calfornia (September 2012.) Sadly Adam had another episode three years after his last (March 2013).
Stacey (Connectit) - "On February 21, 2012, I was in dance class when I went into a KLS episode. I am soooooooo....... happy to say that was the last episode I have had!!! I never thought in a million years I would go this long without one. I have come VERY close a few times, but made it a whole year!!!! Let's hope I NEVER have another one of those HORRIBLE things, they are true hell on earth."
Lori wrote - ""It has been One Year today that Eric came out of his last KLS episode!!!" (February 2013)
Vikki (USA) shared this news - "Nicole (aka NIkki) has had KLS since April 2002 at age 6.5. Her last episode was almost 11 months ago, March 2012, at age 16. She's had over 49 episodes in 10yr time frame with the longest being 64 days" (Feburary 2013)
Dakotah (Ohio) - Was having frequent episodes and then had an eleven month gap (March 2013)
Facebook Achievement Awards
If you would like to share with us having a period of time that is episode free you are welcome to use these images to celebrate and spread the word on facebook on your own web site.