07 Mar
Support and Information for Cavernoma Sufferers
If you or a relative are diagnosed with having a cavernous angioma (also known as cavernous hemangioma, cerebral cavernous malformation (CCM) and cavernoma) you may wish to visit http://www.angiomaalliance.org.uk. This site allows members to get in touch with and learn from each other. Reading other people’s stories makes you realise that you are not alone, as does attending their yearly conference which includes speeches and workshops by experts.
Dear Family Natters,
Many, many thanks “family natters.” If it’s okay, I will send you further information today by snail. I am so glad about the conference receiving publicity. As well as speeches by neurosurgeons in the morning, we have Connie Lee, President, coming over to the UK.
Angioma Alliance was founded in 2002 by Connie Lee, a clinical psychologist and the mother of a daughter with multiple cavernous angiomas. Connie’s personal story with cavernous angioma began in January, 2000. At that time, Connie’s 4-month-old daughter Julia received brain surgery for a major hemorrhage and hydrocephalus caused by a cavernous angioma. It was not known that she had the condition, and by the time Julia was taken to the operating room she was near death. Her neurosurgeon performed a craniectomy, stopped the bleeding and removed the angioma. Since then, Julia has had more cavernous angioma hemorrhages, three of which required surgery. Today, Julia is a bright, outgoing, active six-year-old who loves to swim and ride horses. Although she had the hereditary form, Julia is the first in her family to have the illness. Of those with cavernous angioma, 25% are diagnosed as children.
Best, Ian.
March 8th, 2008 at 8:37 am