“This too shall pass:” This is the simple phrase that stuck with me as I endured fifteen KLS episodes. As I approach my decade milestone since my last episode, I feel reflective and so fortunate to have come through to the other side.
During my adolescence, KLS severely impacted me and my family. From the initial maddening period of being undiagnosed, to missing time and important celebrations and the effect on my school education, it was a very difficult period that I felt would surely define my life. Now, after much thought, I’m proud to say KLS impacted but did not define me.
James with his immediate family: parents, sister, brother-in-law, niece, and nephew
These are the top three things I learned:
Patience: Feeling helpless at times somehow gave me a renewed strength to be patient and find my own balance. I now exercise patience when things aren’t going my way, knowing that I have demonstrated my own inner strength to pull through difficult times.
Gratitude: Specifically, and primarily, I feel gratitude for my caregivers who supported me through to recovery. I’m so grateful to not only have come through the worst of my KLS experience, but to have the perspective to now enjoy life to the fullest. I often look to the expression, “a smooth sea never made a skillful sailor” to remind myself that I am empowered, and stronger, for learning to manage KLS.
Empathy: Enduring KLS opened my eyes to what my other KLS friends were going through as well as other friends that have had to battle health struggles in their lives. Each situation is unique, but having gone through a medical struggle myself helps me to understand and support those around me today.
I hope my story can help others find some solace and know that you are not alone, KLS does not have to define your life, and that this too shall pass.
James, 31, now lives with his girlfriend in San Francisco. Working a fast-paced job at Tesla, he’s been episode free for nearly ten years and no longer feels a daily impact of KLS. In his free time, he enjoys spending time outdoors, traveling, motorsport, and skiing. Feel free to reach out to him for questions or support.
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1. When were your first and last episodes?
I suffered 15 episodes over nine years from December 2003 to October 2012. I have now been episode-free for almost a decade.
2. How long between your first episode and your diagnosis?
My diagnostic odyssey lasted for six years. I was diagnosed in 2009, after suffering my first episode in 2003.
I endured more than 13 types of diagnostic tests during the six years I was undiagnosed, including CT scan, spinal tap, brain MRI, chest X-ray, heart ultrasound, multiple EEGs, allergy tests and a whole battery of blood tests examining my hormones, drug toxicology, metal screens and other possible clues.
3. Were there any treatments you were prescribed? Did you see any success?
Yes, many. I was prescribed more than nine types of medications including massive doses of Ibuprofen, antidepressants, migraine medication, anticonvulsants and nerve pain medications. My family and I were in continuous search for treatment options however ultimately, sleep and time were the only ways to overcome an episode.
I was treated by 15 doctors with specialties ranging from pediatrics and psychology to neurology, infectious diseases, hormones and sleep disorders.
4. Did you have specific symptoms that would inform you of an oncoming episode?
My symptoms and triggers varied. Sometimes, a cold would put me into an episode. Stress and drinking alcohol could also bring on an episode. And sometimes, an episode would start out of nothing and nowhere.
5. On average, how long were your episodes?
Roughly three weeks, but my range was about two to five weeks. I missed more than 200 days of school.
6. Did you miss events – personal or cultural – because of an episode?
Over the years I missed spring break, a family ski trip, my 15th birthday, Thanksgiving, Christmas, New Year’s Eve, my 17th Birthday, another family vacation, and my high school graduation.
Overall, I experienced a strong fear of missing out, especially during my longer 5-week episodes. After those episodes, it felt as though my whole life had paused. I had challenges with high school and exams and the SATs. I had to do lots of catchup.
7. Once diagnosed, what was your biggest fear about having KLS?
That there is no cure for it – this was difficult. I felt like the search for a diagnosis would then lead to a treatment, but the only treatment plan was management.
Now, my biggest fear is whether KLS could be passed down to my own children in the future.
8. Did you have a ritual for “waking up?” How did you transition to coming out of an episode?
I would always get this feeling of being disconnected from the world when I was in an episode and then subsequently gain a sense of clarity as I felt it lifting. I would be keen to reconnect with my life that felt like it had been on pause. Once I had recovered, I would sleep a lot less, sometimes finding it hard to sleep once I was better. I’d do as much as I could and embrace the feeling of being well.
9. Who were your caregivers?
My parents were my primary caregivers and sacrificed a lot to find answers and look after me. After the KLS diagnosis, there was a big relief that we knew what was impacting me. During my final episode, my condition was manageable to the point that I was able to look after myself.
11. What would you like to tell patients who are actively experiencing episodes and their caregivers?
The technique that helped my family and me the most was making a plan of how to best manage an episode. This worked so well that by my final episode in 2012, I got through two weeks by myself – something that would have been incomprehensible during episode one or five.
Additionally, always remember that it will pass. And look after yourself – you will come through it!
12. What would you like to tell your peers – those who are no longer experiencing episodes?
Tell your story because you never know who might be made stronger by it. And please support the KLS Foundation!
13. How did you first get to know the KLS Foundation?
Through the foundation and the 2011 conference in San Francisco. I was a patient panelist in 2011 when I was 21 years old and still experiencing episodes. I met Dani Farber [Vice President of the KLS Foundation] at this conference and kept up with him from then onward. It was inspirational to me that Dani had made it through his episodes and developed a successful career and family life.
14. Any words of wisdom for patients and caregivers finding the Foundation for the first time?
Dive in to get a diagnosis. Work with the KLS Foundation to clarify you have KLS. The piece of mind of knowing what’s impacting you is one of the best steps for recovery.
Reach out to others who’ve had a similar story, get their ideas as likely this will provide comfort. And, please, volunteer for and participate in studies for KLS research.
15. How can the KLS community contact you?
You can reach me at jclongstaffe@gmail.com.