Cavernoma Alliance UK is a charity created by people affected by cavernous angioma, otherwise known as cerebral cavernous malformations or cavernomas. Its mission is to improve the quality of life for those affected by cavernomas through education, support, and promotion of research.

Cavernoma Alliance UK, formed in February 2005 (as Angioma Alliance UK), is comprised of cavernous angioma patients from all over the UK.

Cavernoma Alliance UK aims to provide a support group for those with cavernous angioma and to make the general public aware of cavernous angioma. Cavernoma Alliance UK is registered in the UK as a charity (number 1114145).

What is Cavernous Angioma?
Cavernous angiomas are clusters of abnormal blood vessels found in the brain, spinal cord, and, rarely, in other areas of the body. There are many names for this condition:

• cavernous angioma
• cavernous hemangioma
• cerebral cavernous malformation (CCM)
• cavernoma

A typical cavernous angioma looks somewhat like a raspberry, but it can range in size from microscopic to inches in diameter. It is made of multiple little bubbles (caverns) of various sizes, filled with blood and lined by a special layer of cells (endothelium). These cells are similar to those that line normal blood vessels, but the bubble-like structures of a cavernous angioma are leaky and lack the other layers of normal blood vessel wall. A cavernous angioma can cause seizures, stroke symptoms, hemorrhages, and headache.
Cavernous angiomas are estimated to occur in approximately one in every 100-200 people. Most people start having symptoms in their 20s or 30s. Generally, more than 30% of those with cavernous angioma eventually will develop symptoms.

A solitary cavernous angioma may be present at birth or may develop later in life. For at least 20% of those with the illness, cavernous angioma is inheritable. This form of the illness is often associated with multiple cavernous angiomas. This occurs at a higher rate among Mexican-American families. Each child of someone with the familial form has a 50% chance of inheriting the illness.

Symptoms
A cavernous angioma may have no symptoms. When symptoms are present, they often depend on the location of the angioma and on the strength of the angioma walls. Cavernous angiomas can cause symptoms including:

• headache
• seizures (epilepsy)
• neurological deficits, such as weaknesses in arms or legs, vision problems, balance problems, or memory and attention problems.

Symptoms may come and go as the cavernous angioma changes in size with bleeding and reabsorption of blood. Angiomas may bleed through a weak spot in the angioma wall into the surrounding brain tissue. This is called an overt hemorrage. A hemorrhage in a cavernous angioma in the brain stem can be life-threatening.

Diagnosis and Treatment
Cavernous angiomas are diagnosed most often when they become symptomatic. Although angiomas have been known since the 1930s, they have not been reliably diagnosed until the advent of the MRI (magnetic resonance imaging) in the 1980s. Previously, the illness may have been misdiagnosed as multiple sclerosis or as a seizure disorder with no known cause. An MRI scan remains the best means of diagnosing this illness. The MRI scan may need to be repeated to assess change in the size of a cavernous angioma, recent bleeding, or the appearance of new lesions.

Medications are available to treat seizures and headaches caused by cavernous angiomas. Surgery is advocated for cavernous angiomas with recent hemorrhage, those which are expanding in size, and in some cases, those which are causing seizures. Radiosurgery, by gamma knife, linear accelerator or new shaped beam techniques, is a controversial treatment that has been used on cavernous angiomas too dangerous to reach through traditional surgery.

What We Don't Know about Cavernous Angioma
While researchers continue to discover new facts about cavernous angioma every day, many important research questions remain.

• Genetic researchers and a growing number of other researchers are working to determine the cause of the illness and the mechanisms by which the defective blood vessels are formed.
  
• We don't know most of the factors that lead to angioma bleeding and re-bleeding. Because we don't know what causes a particular cavernous angioma to bleed, we don't know how to reduce the risk.
  
• We don't know how to remove a cavernous angioma without brain surgery. Less intrusive removal methods may allow for treatment of more angiomas before they become problematic.

To find out more, visit the Cavernoma Alliance UK website.

What is Parkinson's disease?

• Parkinson's Disease is a progressive, neurological disorder that occurs when cells die in the part of the brain that controls movement - like walking, talking, swallowing and writing.
  
• The dying cells produce dopamine, a chemical messenger that enables people to make smooth, co-ordinated movements. It is not known why these cells die.
  
• The three main symptoms of Parkinson's are tremor, muscle stiffness and slowness of movement. But not everyone will experience all three.
  
• Other symptoms may include an altered posture, difficulties with balance, speech and writing, sleep difficulties, bladder and bowel problems, swallowing difficulties, depression, anxiety, excessive sweating, and memory problems. People with Parkinson's have an increased risk of falling.

 
How many people are affected by Parkinson's?

• About 10,000 people are diagnosed each year in the UK.
  
• Around one in 20 people with Parkinson's is under the age of 40 when diagnosed.
  
• It is estimated that as many as 120,000 people in the UK have Parkinson's. That is one in 500 of the general population.
  
• Up to 7 million people in the UK are touched by Parkinson's.
  
• 4 million people worldwide are estimated to have Parkinson's.

 
How is Parkinson's treated?

• There is no cure for Parkinson's, but there are a range of treatments to control the symptoms and maintain quality of life.
  
• Drugs are the main treatment for Parkinson's. They work to restore the level of dopamine in the brain or mimic its actions, but can have side effects, including abnormal involuntary movements (dyskinesia).
  
• Deep Brain Stimulation (DBS) is a type of surgery where electrodes are implanted deep inside specific parts of the brain. The electrodes are connected to a small battery under the skin in the person's chest, to generate electrical signals to stimulate the brain. If successful, DBS can provide significant improvement in an individual's symptoms and quality of life, but only some people with Parkinson's are eligible for this operation.
  
• Physical therapies such as physiotherapy, speech and language therapy and occupational therapy have an important role to play in the management of Parkinson's.
  
• Parkinson's Disease Nurse Specialists are dedicated to providing quality healthcare support and advice to people with Parkinson's. They work alongside GPs, neurologists, care of the elderly physicians, hospital and practice nurses, dieticians, continence advisers, social workers, physiotherapists, occupational therapists, speech and language therapists and Parkinson's Disease Information and Support Workers.

What about the Parkinson's Disease Society?

• The Parkinson's Disease Society is the largest member organisation for people with Parkinson's in the world and the leading authority in the UK on Parkinson's.
  
• It is the UK's leading non-commercial funder of research into the cause, prevention and improved management of Parkinson's.
  
• Since 1969, the Parkinson's Disease Society has spent over £40million on research into all aspects of Parkinson's. In 2008 alone, it invested £4.2million into new research. Currently, there are 90 research projects running, worth a total of £14million.
  
• It provides expert information on all aspects of Parkinson's and a local support network for people with Parkinson's, their carers, families and friends.
  
• A freephone Helpline provides help and advice to all people affected by Parkinson's. It can be reached by calling 0808 800 0303 Monday-Friday 9.30am-9pm and Saturday 9.30am-5.30pm.
  
• The Parkinson's Disease Society is totally dependent on voluntary donations.

To find out more, visit the Parkinson's Disease Society website.