When diagnosed as a young adult or adult, an initial goal is to understand their own symptoms and how to advocate for themselves. Often times, adults living with HH speak of fatigue, short-term memory loss, slow processing, and limited frustration tolerance as symptoms that often interfere with their day-to-day living. Individuals with these symptoms will want to understand strategies and techniques that may help them improve their ability to endure living with these symptoms. For example, a young adult may want to understand their Individual Education Plan and/or 504 Plan and what type of work or career path would be a realistic goal. Many post-secondary schools offer assistance to individuals with educational accommodations to help advancement into the world of employment. A job coach or vocational assessment will be helpful in determining interests and realistic expectations. For example, someone who is slow to process and easily fatigued, may not be capable of a long shift incapable of providing for breaks.
Self-care for young adults and adults that have been diagnosed with a hypothalamic hamartoma will start by understanding oneself biologically and meeting his/her own needs. For example, sleep will be an important part of an individual’s self-care to improve levels of fatigue, and also to decrease risk of seizures, if that symptoms applies. Another risk factor may be stress levels, therefore, management of stress by way of exercise, meditation, or even counseling may be beneficial. Young adults and adults may wish to seek support for limited frustration tolerance and support in their relationships. This could be formally through a therapist or counselor, or informally by meeting others with the same symptoms, such as on-line. Many individuals find that speaking with someone with similar difficult experiences helps to reduce isolation and improves a person’s ability to cope with a symptom or situation at hand. Hope for HH has begun hosting Meet and Greets events to help others connect. Stay tuned to our social media for the next scheduled events.