These are some links to disinfectants that are used in the lab that may be of use to people with leukodystrophy, particularly in the winter time. Many people with leukodystrophy have to avoid infections (rife in winter, as we all know!), as the outcome could be catastrophic.
The below is a website that makes a range of products called 'Biocleanse' - which is proven effective against MRSA amongst other things. Their range includes wipes, disinfectant specifically for cleaning things like cough assists, bipap machines and suction machines - but on the website under 'application guide' it tells you what each product is best used for. I think you may have to contact them to get prices and information on ordering. The website is UK based.
http://www.dentisan.co.uk/index.html
The next link is to a disinfectant against viruses. It is marketed towards laboratories and livestock, but is effective against 18 viruses known to man and animals and might help some people with leukodystrophy to stay infection free in the winter.
http://www.rmsupply.co.uk/Virkon_lab_products.htm
The next link is the link to some books that are sold on Amazon about myelin. As can be seen many of them are pretty expensive, but at the least the link will give you names of books you can possibly find in a hospital library. The may also be good birthday or Christmas presents, or the money could be raised by fundraising.
http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=myelin&x=13&y=18
There don't seem to be many reader-friendly books on leukodystrophy, which is not surprising, even if it is disappointing. However, the closest scientific ones that may help are linked here. They are mainly internet guides to sourcing more information:
Leukodystrophy - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
http://www.amazon.co.uk/Leukodystrophy-Dictionary-Bibliography-Annotated-References/dp/0497006545/ref=sr_1_1?ie=UTF8&s=books&qid=1270037258&sr=1-1
The Official Parent's Sourcebook on Leukodystrophy: A Revised and Updated Directory for the Internet Age
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This one is specifically for Metachromatic leukodystrophy:
The Official Parent's Sourcebook on Metachromatic Leukodystrophy: A Revised and Updated Directory for the Internet Age (Paperback)
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This next book is not about leukodystrophy but if you ever have to advocate to get your loved one with leukodystrophy the equipment, care and (legal) support they need whether in hospital or out of it, this is apparently an invaluable book:
How Doctors Think
http://www.amazon.co.uk/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=sr_1_1?ie=UTF8&s=books&qid=1270038126&sr=8-1
Finally, some moving, honest and unsentimental accounts from parents of caring for children with leukodystrophy:
"Without a Word" - Jill Kelly, founder of Hunter's Hope. A memoire of her time with her son Hunter, who had Krabbes leukodystrophy
http://www.jillk.org/author/without-a-word/
"Eyes That See" - Christina Levasheff - parent of Judson Levasheff who had Krabbes leukodystrophy
http://www.storyofjudson.com/eyesthatsee
I also hear that Augusto Odone plans to write a book to commemorate his son, Lorenzo, who died from aspiration pneumonia as an indirect effect of adrenoleukodystrophy. Augusto founded the Myelin project and he and his late wife Michaela concocted "Lorenzo's Oil" - a blend of 4 parts Triglyceride monounsaturated oleic acid and 1 part Triglyceride monounsaturated erucic acid that prevents the body making the very long fats that build up in ALD. Links to the myelin project are in my blog entry "Useful Organisations".
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