Imagine falling asleep for eight months long and having little to no memory of the time spent ill during those eight months. This is what happened to Alanna Wong. Alanna grew up In the Emerald city of Seattle, Washington. She had the finest things in life-an incredible family, a wonderful community, a good education, and was very well liked by her peers. She was happy, healthy, athletic, vibrant and full of life! Her life was nothing short of what any young girl would want, but Alanna was diagnosed with Kleine-Levin Syndrome (KLS) when she was 18. She had lived with this rare neurological condition since age 10, and for years, doctors could not explain what was happening with her.
As described from Alanna’s website: “Kleine-Levin Syndrome (KLS) also known as Sleeping Beauty Syndrome is a rare neurological disorder which affects roughly 1000 known patients worldwide. It is a life-altering illness which is widely misunderstood and frequently misdiagnosed as a psychological illness. The illness often strikes in adolescence and many sufferers exhibit symptoms for years before the illness appears to taper off. KLS is a devastating illness which robs the patient of time, experiences, and relationships.
KLS is episodic, meaning that the patient alternates between sick and healthy states. Episodes vary in duration and can last days, weeks, months, or even years. When in an episode, a KLS sufferer functions in a dream-like or semi-conscious state and can exhibit periods of excessive sleep and altered personality traits. In between episodes the patient is normal with no outward signs of behavioral dysfunction. When healthy, a patient may not have much memory of the time spent ill.
During a KLS episode, blood flow is reduced to the thalamus region of the brain. When supporting a KLS sufferer it is important to remember that behavioral changes are not a choice but are in fact caused by a change in brain function. KLS is a devastating illness. Family and friends can provide crucial support and comfort by acknowledging the illness and letting the sufferer know that they are loved. Understanding, loyalty, and friendship can help a patient through difficult times.”
KLS was especially hard on Alanna before her diagnosis. She had no explanation for the way she was feeling and behaving, and was misunderstood by her peers. She also fell behind in her schoolwork and lost a lot of friendships. However, once she was diagnosed, her situation slowly began to improve. Now that she had a name for her condition, she was able to start afresh and begin rebuilding her life. Alanna just wanted things to get better so that she could move forward. Before Alanna was diagnosed with KLS, she had a totally different set of dreams. Now, her dream is to improve the quality of life for those struggling or for anyone experiencing chronic illness.
Over the last seven years, she has focused her energy on providing others with an online community to connect and engage and has offered a heart of compassion to let others struggling know they are important and cared for. Alanna has dedicated her life to raising awareness for KLS in an effort to help other sufferers.
Alanna will be featured on The Doctor’s TV show November 19, 2014. You can check your local listing here: https://www.thedoctorstv.com/local-listings
Alanna was contacted by The Doctor’s Show and will be discussing the journey living with this rare neurological/hypersomnia condition. Alanna will also be sharing a breakthrough treatment discovered by Dr. David Rye, Emory University School of Medicine’s Professor of Neurology and the Director of Research for Emory’s Sleep Program, that has kept her awake, healthy, and out of episodes. This treatment has improved Alanna’s quality of life tremendously. And the treatment shows promise for many hypersomnia patients. Alanna’s experience on the Doctor’s was life-altering! The doctors and producers of the Doctor’s Show could not have been better hosts. Every step of the way, the Doctor’s producers worked with Alanna and were understanding of her condition. They made Alanna and her mother feel very comfortable and their generosity was enormous. It was an experience Alanna will never forget!
Alanna hopes that people watching this segment will become aware of the affects Kleine-Levin Syndrome has on patients and their families. She hopes that this segment will help people to never give up searching for answers. Alanna and her mother’s wish is for all people living with a chronic condition to have at least one person that loves, supports, and accepts them during their battle! Support is what makes all the difference! You do not want to miss this segment. Mark your calendars for Wednesday, November 19th and be sure to check your local listings here. https://www.thedoctorstv.com/local-listings
If you are unable to watch the show, be sure to check back here for the online clip: https://alannawonglife.com/press/
If you would like to help Alanna with her “Goodnight KLS!” campaign to help spread the word about this rare disorder AND receive a free KLS awareness band, please click on the following link: https://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/