WHAT IS A HYPOTHALAMIC HAMARTOMA? WHAT ARE THE SYMPTOMS? Seizures Emotional and behavioural problems Precocious Puberty TREATMENT A Hypothalamic Hamartoma is a benign lesion in the brain that lies on or around the Hypothalamus. Although small, this is one of the most important parts of the brain as it participates in a number of vital activities. The Hypothalamus regulates a variety of hormonal functions and exerts control over the blood vessels and glands of the body via the autonomic nervous system. It’s an integral part of the limbic system, which influences important aspects of our behaviour - and even our very survival. Vital functions such as chemical and emotional balance, body temperature, sexual and nutritional appetites and sleep cycles are all regulated by the hypothalamus. Symptoms can vary tremendously. Typically, though, individuals experience a combination of some of the following: This is defined as the early onset of puberty. In some cases this may occur in isolation, with no accompanying symptoms such as seizures or neurological problems. Antiepileptic Drugs (AEDs) - Generally the gelastic seizures are drug resistant. But AEDs have sometimes been shown to reduce the seizure frequency and, in some cases, help with other forms of seizures that have developed. Surgery - Options for surgery vary among individuals, due to the size and location of their lesion. Each person is affected by this condition differently. These can take form as rages or obsessive behaviour. Some people affected may be diagnosed on the Autistic spectrum, including Aspergers Syndrome. The most common form of seizure is known as a Gelastic Seizure. Gelastic seizures are called the “laughing seizure” because they may look like bouts of uncontrolled laughter or giggling. In some sufferers, the vocalization has a crying quality and the facial contraction resembles a grimace. These crying seizures are called Dacrystic Seizures. For many, the seizure pattern can develop to more devastating absence, complex partial or generalised seizures. It is usually when other seizure types begin that behavior and cognitive issues become more obvious.

Hope for HH UK Brochure

Download PDF Report

Upload
erica-webster
View
222
Download
4

Embed Size (px)

DESCRIPTION

Hope for Hypothalamic Hamartoma UK Informational Brochure

Citation preview

WHAT IS A HYPOTHALAMIC HAMARTOMA?

WHAT ARE THE SYMPTOMS?

Seizures

Emotional and behavioural problems

Precocious Puberty

TREATMENT

A Hypothalamic Hamartoma is a benign lesion in the brain that lies on or around the Hypothalamus.

Although small, this is one of the most important parts of the brain as it participates in a number of vital activities. The Hypothalamus regulates a variety of hormonal functions and exerts control over the blood vessels and glands of the body via the autonomic nervous system. It’s an integral part of the limbic system, which influences important aspects of our behaviour - and even our very survival. Vital functions such as chemical and emotional balance, body temperature, sexual and nutritional appetites and sleep cycles are all regulated by the hypothalamus.

Symptoms can vary tremendously. Typically, though, individuals experience a combination of some of the following:

This is defined as the early onset of puberty. In some cases this may occur in isolation, with no accompanying symptoms such as seizures or neurological problems.

Antiepileptic Drugs (AEDs) - Generally the gelastic seizures are drug resistant. But AEDs have sometimes been shown to reduce the seizure frequency and, in some cases, help with other forms of seizures that have developed.

Surgery - Options for surgery vary among individuals, due to the size and location of their lesion.

Each person is affected by this condition differently.

These can take form as rages or obsessive behaviour. Some people affected may be diagnosed on the Autistic spectrum, including Aspergers Syndrome.

The most common form of seizure is known as a Gelastic Seizure. Gelastic seizures are called the “laughing seizure” because they may look like bouts of uncontrolled laughter or giggling. In some sufferers, the vocalization has a crying quality and the facial contraction resembles a grimace. These crying seizures are called Dacrystic Seizures. For many, the seizure pattern can develop to more devastating absence, complex partial or generalised seizures. It is usually when other seizure types begin that behavior and cognitive issues become more obvious.

HOPE FOR HYPOTHALAMIC HAMARTOMAS UK

CONTACT DETAILS

Chair - Emma NottMobile no. 07711547348

Treasurer - Carrie FulcherMobile no. 07817063243

Secretary - Sue Jackson Mobile no. 077972801293

www.hopeforhh.org

[email protected]

Carrie has had daily Gelastic and Complex Partial Seizures all of her life but was misdiagnosed. She had an unnecessary right-sided Temporallobectomy in 2013. It was only after this, when Carrie’s seizures

increased, that a correct diagnosis was finally made.

Faith has Gelastic and Complex Partial Seizures on a daily basis. She experienced Precocious Puberty at 3 months’ old and has emotional and behavioural difficulties. She had Surgery in 2011, which has gone some

way to decreasing her seizures. But she continues to experience them daily.

Thank you for taking the time to read this brochure. If you feel you could help raise awareness about this condition or would like to help in any other way, please feel free to contact us.

Hypothalamic Harmatomas are often difficult to diagnose and even harder to treat. Hope UK was set up and is run by people who’ve been affected by the condition or have children who are. As well as providing information and support to hypothalamic hamartoma patients, their caregivers and healthcare providers, we aim to promote research into early detection, improved treatments and, ultimately, a cure.

ABOUT US