12 Tips for Living With Kleine-Levin Syndrome (KLS)


Living With KLS12 Tips for Living With Kleine-Levin Syndrome (KLS):

Environment: Create a physical environment that promotes safety and reduces fear. The goal is to promote feelings of security and belonging for the KLSer. Try to keep the environment very quiet with minimal stimulation. Some ideas for the caregivers are to: 1) put your phones on silent. 2) Draw the blinds so that it is not bright in the room. 3) Watch television with closed captioning so that there is no noise. 4) Let the KLSer sleep. Avoid trying to wake him/her up or keep him/her awake. KLSers need their sleep. 5) Make sure the KLSer stays hydrated. 

Appreciate: KLSer, learn to appreciate and acknowledge the people who support you. Ask yourself, “Am I acknowledging and respecting that person’s kind treatment?” Or, “Am I trying to find acceptance in people who are not able to give me the acceptance that I need?” Keep the ones who accept you close to you. If someone doesn’t accept you living with KLS, it may be time to move on. Show your appreciation to your support system by writing a loving card and staying open and honest with your communication about KLS, so that they have a better understanding.

Acceptance: Accepting the KLSer’s frame of reference by changing our own behaviors. When we realize that the KLS person is dealing with a temporary brain malfunction causing altered brain function, we can alter our behavior. For example, if the KLSer is in a childlike state, we can care for them at that level instead of demand they act their age. Acceptance is loving the person in the state that they are in and not trying to change or fix them. Acceptance is not blaming. It is not demanding. Acceptance is understanding. Acceptance is inclusion. Acceptance is love. Acceptance is what every person needs especially when living with KLS. Acceptance is checking in with the KLSer. Acceptance is sharing a moment in life together. Acceptance is being kind. Acceptance is having time. Acceptance is approval. Acceptance is sticking around.

Find an advocate. Having just one person who understands and accepts you can make all the difference because then, he or she can explain to others what you’re going through. When you’re struggling with KLS, you may need someone to speak for you so that your rights are met or your problems are solved. Advocates are people who can help you with your appointments. They can help you voice your feelings about decisions that must be made. They can help you make the best decisions concerning your life. They can help with obtaining disability benefits for you or help you with an education plan. An advocate can help you explain to family members what you are going through. As your support system expands, you will find that more people are willing to advocate on your behalf.

Develop a support system: Having a network of people that support you and your KLS loved one is crucial when living with KLS. It’s people’s support that keeps the KLSer intact and keeps them going. Having a support system helps the KLS family feel that they are cared about. Be around people who understand what you’re going through and who are genuinely concerned about helping you heal. These people should be easy to talk to, trustworthy, caring, reliable, and positive-minded. You know that if you need them, they will be there for you. More importantly, they hang out with you because they enjoy doing so – being around you is not something they look at as a chore or a duty, but rather, something that is important to them.

Search for a doctor that has knowledge about KLS: KLS is very rare so it may be difficult to find a doctor that knows about KLS or has seen a KLS patient. A good starting point is going to the KLS Foundation website and looking up Doctors Familiar With KLS to see if there is a doctor in your area familiar with the disorder. Here is the link: http://klsfoundation.org/doctors-familiar-with-kls/ If there is no one on the doctor’s list in your area, it may be smart to call one of the doctor’s closest to your area from the KLS Foundation’s list and ask for a doctor’s recommendation in your area. Or you could ask if that doctor would be willing to see you or your child. If that doesn’t work, you could search for a sleep specialist or a neurologist in your area.

Remember all the people who care about you: This can be easy to forget when you are going through a KLS episode. During an episode your mind is in an altered state and can easily forget about the things that matter most. It is important to remember the people who are there for you and care about you. One thing that can help is to write a list of people that truly care for you and have your best interest at heart. Next to their name, write down the nice things they have done for you. Keep that list close to you and read it as much as you can. When you are low, you may want to call or connect with one of the people on your list that you trust.

Know that you are not alone: Know that you are not alone and that other people are going through the same thing as you. There is a wealth of information about KLS on the internet. The KLS Foundation has a wonderful private support group online. If you would like to join, click here: https://www.facebook.com/groups/KLSFoundation/ With the power of the internet you are now able to talk with other KLSers and their family members to get the support and understanding that you need. I highly recommend connecting with others that are going through the same/similar thing you are, as it will help you not feel as alone. You will find support, validation, and build connections.

Waking Up from an episode: Do not force yourself to function too soon from coming out of an episode. After waking up from an episode, it’s like a semi-truck has hit you. You need time to make a full recovery from the episode. Give the KLSer time to heal their brain. Try not to push them to do too much too soon. Remember that life is not a race. Take one day at a time. Let your brain rest and heal.

Do not force yourself to wake up from an episode: See “Waking Up from an episode.”

Activities: Because a KLS episode can leave the KLSer somewhat alienated for long periods of time, having activities is very therapeutic. Activities can change negative emotions to feelings of purpose and accomplishment. Some tips are: finding a hobby you enjoy-i.e. knitting, reading, music, taking an online course, exercising, picking up a sport, etc. Everyone has their own personal limits and boundaries; learning these can help KLSers to not push themselves too far. It can be easy to feel pressure to try to keep up with everything, but it is crucial to make your health a priority. Take life one day at a time and find a schedule that works for you.

Have hope: Even if you are estranged from family or friends at the time, hope opens up doors. Hope is the force for improvement. Hope helps those who are suffering endure their plight and overcome their difficulties. Hope will open your mind to finding new opportunities, friends, and help. Keeping hope alive can help improve your situation and heal your soul. No matter how deep into the depths of despair you fall, hope is what will keep your head above water. Hope offers dreams and dreams offer life.


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All the best,

Alanna Wong


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