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Mason HoweLittle Brit with Kleine-Levin Syndrome
Date of Birth: 01.01.2007
Country:  Great Britain |
Content:
- A British Boy's Battle with Sleeping Beauty Syndrome
- Unpredictable Triggers and Life's Challenges
- Managing Symptoms and Future Concerns
- Kleefstra-Lewin Syndrome: A Rare and Complex Disorder
- KLS can persist for 10 years or more.
A British Boy's Battle with Sleeping Beauty Syndrome
Mason's Childhood Stolen by Rare 'Sleeping Beauty' Condition11-year-old Mason Howe, from Callington, Cornwall, has been living with the rare Kleefstra-Lewin Syndrome (KLS) for two years. The neurological disorder affects approximately one in a million people and is often misdiagnosed as "laziness and lethargy."
During episodes, Mason can sleep for up to 20 hours a day, with only a couple of hours of foggy consciousness. One of Howe's most severe episodes occurred near Christmas 2018, where his "sleep" lasted six weeks. His mother, Mary, expressed her concerns about his future, as his normal childhood experiences have been robbed from him.
Unpredictable Triggers and Life's Challenges
Mason first experienced the effects of the "sleeping beauty" syndrome when he was six years old, triggered by a smoke machine. Common triggers also include colds, coughs, and flu-like symptoms, leading to an increase in his episodes, especially during winter months.
Due to his excessive sleepiness and clouded consciousness, Mason is supervised at home after school, mostly by his mother. Despite his condition, he excels in academics and attends all his classes. He is aware of his situation and wants to raise awareness that he is not lazy, but rather suffers from a neurological disorder.
Managing Symptoms and Future Concerns
Mason and his family receive virtual consultations with Dr. Paul Grintgras, the only specialist in Kleefstra-Lewin Syndrome in the UK. Grintgras recommended lithium therapy to alleviate Mason's symptoms. Lithium is commonly used to treat bipolar disorder and treatment-resistant depression.
Mary hopes that lithium will enable her son to avoid missing school and keep up with his studies. However, she is still concerned about Mason's future, both in terms of his education and his ability to function as an adult.
Kleefstra-Lewin Syndrome: A Rare and Complex Disorder
Kleefstra-Lewin Syndrome is a rare condition characterized by recurrent episodes of excessive sleepiness (hypersomnia), accompanied by clouded consciousness and behavioral changes. The cause of KLS is unknown, but it is believed to have a genetic basis.
Episodes can last several days, weeks, or months, during which time the affected individual cannot function normally. They are unable to care for themselves, attend school, or work. After emerging from hypersomnia, sufferers have little or no memory of their experiences. Between episodes, sleep, behavior, and cognition return to normal.
