I am text block. Click edit button to change this text. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Hypothalamic Hamartoma: Explaining the Relationship Between the Symptoms…
Hypothalamic Hamartoma is a rare brain tumor that is best treated at an epilepsy specialty center. Given the rarity of the diagnosis, most neurologists, neurosurgeons and centers are unlikely to encounter and treat even one HH patient let alone a significant volume of patients. It is critical to identify a neurology team including an epileptologist…
Seizures in people with HH are often intractable, meaning they don’t respond well to seizure medications. Over the last decade, successful surgical treatment options have been developed and are improving all the time. Treatment options now focus on: Reducing the size of the tumor or removing it if possible. Controlling seizures, ideally, the individual has…
The Anatomy of Hamartoma Several attempts have been made to classify HH in order to better understand the characteristics and the impact the HH may have on the surrounding critical structures in that area of the brain. What type of HH you have will be a factor when deciding on a treatment plan. To properly…
Most Common Symptoms There are two hallmark symptoms of a hypothalamic hamartoma, epilepsy and precocious puberty. Some people develop one, or both symptoms, depending on the size and location of the tumor. Specifically, epilepsy develops if the tumor is in the back of the hypothalamus, whereas precocious puberty develops if the tumor is in the…
Size and Location of the Hypothalamus The hypothalamus is a small almond sized area, located in the center of the brain. It is below the thalamus and behind the optic chiasm. The pituitary gland hangs on a stalk directly below the hypothalamus. What does the Hypothalamus Do? The hypothalamus creates hormones to help stimulate or…
We are Mark and Kristy, first time mom and dad to Brett, age 18 months. We are relatively new on our HH journey, as Brett was diagnosed at 10 months. From the day of our diagnosis, Hope for HH has been our lifeline for support and information. We are so thankful to have found such…
Adults with HH Adults with a chronic and sometimes catastrophic rare disease like Hypothalamic Hamartoma Syndrome must deal with a wide range of issues, beyond the medical condition itself. Hypothalamic Hamartoma Syndrome can affect individuals differently and that is especially true for adults with HH. While a great deal of information is available concerning treatment…
Living with HH When a person is diagnosed with a hypothalamic hamartoma, that person’s entire system of living is likely impacted. For more mildly affected individuals, the condition may pose challenges at work/school or in a marriage/relationship. When children are diagnosed, the condition may affect family dynamics with parents juggling specialty care for the child,…
Going for Treatment In most cases of hypothalamic hamartoma with epilepsy – where the seizures are resistant to medication, it is better to consider a surgical option early in the treatment plan. With many ultra-rare epilepsy syndromes like HH, it is said that “time is brain”. This means, the longer the seizures go uncontrolled, the…