Dorothee
Germany
|
According to the Roman-Catholic radio channel “Domradio” the following e-mail reached them last night: “Maybe it’s because until some days ago I had subscribed to the newsletter of a Roman-Catholic institution that I just received the following chain e-mail whose first sender – I mean the author – I do not know: “Neuronal ceroid lipofuscinoses” marks an always lethal metabolic disorder which depending on the sub-classification affects babies, infants or school-kids. Initially this disease manifests itself through an increasing debility of sight to the point of total blindness. In addition to that patients suffer from hallucinations, epilepsy and dementia. In the end the patient loses really all of his motor and cognitive functions entirely. Since every form of “neuronal ceroid lipofuscinoses” is not healable (yet) and leads to inevitable death, palliative treatment is the only treatment possible. Despite the fearfulness of this disease it hardly receives any medial attention comparable to the one diseases like cancer, mucoviscidosis or HIV receive and in fact is rather unknown. * Especially around Christmas it must be hard for those bereaved by these people who died at such a young age to not even get that much sympathy in their solitude – just think of all the attention for example poor children in the East of Europe, in Africa or in Latin-America receive around Christmas by the media – or to at least have someone around to have understanding of this disease. Thus as a sign of solidarity I ask everyone reading this chain-letter – or hearing of it – to intercede loudly or mutely on December 23rd at 8PM – one day before Christmas-Eve – for those who suffer from “neuronal ceroid lipofuscinoses” or who already died of it Anyway I want the writer of this e-mail to be supported in this for taking action. I’d appreciate that if you would maybe send this as a newsletter to everyone who subscribed to the “Domradio-Newsletter” or simply give this a brief mention in your program. However that is just a suggestion and as I didn’t write this chain-letter myself, I don’t wish my name to be mentioned in the same text as this e-mail. At most my given name, Anna!”
- I’m not sure! Is the author also trying to imply here that if this received more attention, doctors would eventually find a cure?
—-—-—-—-—-—
Re-upload: “Tagesschau” says that in Nepal a horrible earthquake killed about 800 people. Many citizens of the capital Kathmandu are homeless now and refugees within their own country. If you want to know about an organisation that helps disadvantaged people in this country or if you even want to get involved, too, you should visit the following website: “http://www.cwsuk.org/projects_we_support/”.
|