People afflicted by rare illnesses which predominantly affect Jews will be able to find out how to cope with them through a new health website.
Tay-Sachs disease, Niemann-Pick syndrome, Canavan disease, Crohn’s disease, cystic fibrosis and even the extremely rare maple syrup disease are among the illnesses which will be highlighted on the website www.healthtalkonline.org.uk
Oxford sociologist Dr Sara Ryan, who is running the part of the website that deals with Jewish health, has been seeking volunteers all over the country to give interviews about these illnesses.
She said the impetus for a Jewish section of the website came from two of its board members, chairman Lord Stone and co-founder Andrew Herxheimer, who are both Jewish.
Jewish Care has also been involved, together with academics in other disciplines such as anthropology and endocrinology.
Dr Ryan will interview up to 50 people for the study from across the country and all parts of the religious spectrum.
“Rabbis have encouraged people to take part,” she said.
The disorders which particularly affect us
Canavan disease is a rare but always fatal inherited degenerative brain disorder which has no cure.
Crohn’s disease is an inflammatory bowel disease which can be treated.
Cystic fibrosis is an inherited chronic disease. Niemann-Pick disease symptoms include brain degeneration, learning difficulties, spasticity, feeding and swallowing difficulties, slurred speech and enlarged liver and spleen. Treatment is generally limited.
Maple Syrup urine disease is an inherited disorder. If undetected, it can lead to seizures, coma and death.
Tay-Sachs disease is a progressive neurological genetic disorder. Symptoms appear when the child is months old and most with Tay-Sachs die early in childhood.
● The National Information Centre for Metabolic Diseases — www.climb.org.uk
● Chicago Centre for Jewish Genetic Disorders — www.jewishgeneticscenter.org
● Cystic Fibrosis Trust — www.cftrust.org.uk
● The National Association for Colitis and Crohn’s Disease — www.nacc.org.uk