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From Fellrnr.com, Running tips
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=Supposition and incomplete information=
* It seems reasonable that blistering in the epidermis would not cause dystrophy scaring . * There are suggestions that blistering in the epidermis fills with lymph fluid not blood, giving them a clear appearance.
* Some [http://www.nature.com/mt/journal/v17/n1/full/mt2008262a.html research] has looked at Type VII Collagen Injections as a treatment for DEB.
=Classification of DEB=
[[File:DEB Classification.jpg]]
=Suggestions for EB sufferers=Over the years I've tried many experiments to try to help with my skin condition. The nature of EB means that there are relatively few things that seem to make a worthwhile difference, but here are some things that have helped me.* '''Omega-3'''. A high intake of [[Omega 3]] oil high seems to make a huge difference to both wound healing and the general condition of my skin. I take both a fish oil supplement and flax oil. For the fish oil I take 1-3 tablespoons of [http://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=Barlean%27s%20Organic%20Oils%20Omega%20Swirl%20Fish%20Oil Barlean's Organic Oils Omega Swirl Fish Oil] which is in a liquid, rather than capsule form, so it's easier to take a reasonable quantity. I also take around 3 tablespoons of flax oil, putting it into a shake with protein powder and fiber (see below). I've got on well with [http://www.amazon.com/Natures-Way-Super-Lignan-Ounce/dp/B000F4WR16 Nature's Way Flax Oil] but you can buy [http://www.bulknaturaloils.com/Products/15925-bulk-organic-virgin-flax-seed-oil.aspx flax oil in bulk] at a much lower price. I also work hard to keep my intake of Omega 6 low as this works against Omega 3 in many ways, and generally our diets are high in Omega 6. You find Omega 6 in high quantities in nearly all plant based oils, including nuts. * '''Vitamin C'''. I've been surprised just how much difference high doses of Vitamin C make to my skin. It seems to influence my overall skin health, the rate of wound healing, and the level of scarring. There is research that indicates that it may take several months for the level of Vitamin C to build up in your system. I take 500mg of chewable Vitamin C with 400IU of Vitamin E three times a day, along with a chewable multivitamin. * '''Fiber'''. High levels of [[Fiber]] are important for digestive health, and this is particularly important for EB sufferers. I've a suspicion that the fiber also helps my skin in directly, possibly due to the short chain fatty acids that are produced by the intestinal bacteria from digesting parts of the fiber. I take [http://www.amazon.com/Source-Naturals-Psyllium-Powder-Ounce/dp/B001G7R734 Psyllium Husk Powder] mixed in a shake, or [http://www.amazon.com/Metamucil-Sugar-Free-Bottle-doses/dp/B0027FXK08 Metamucil Sugar Free] on its own. I ignored the instructions to drink it quickly, but leave it to absorb the fluid and form a slightly thicker drink. This makes it much less likely to irritate my throat, and reduces any possible risk of choking.* '''Protein'''. Obviously the additional needs of wound healing require an increased protein intake. I drink quite a bit of organic full fat milk which has good protein intake, but I also supplement with a good protein powder. I use [http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dhpc&field-keywords=Optimum+Nutrition+100%25+Whey+Gold+Standard&rh=n%3A3760901%2Ck%3AOptimum+Nutrition+100%25+Whey+Gold+Standard Optimum Nutrition 100% Whey Gold Standard]. * '''Humidity'''. I've found that while I love the desert, and low humidity environments, my skin is just the opposite. In winter I use a humidifier, which has helped my skin enormously.=Fellrnr's Shake=This is one of the various shakes I make up, adapted for EB sufferers.* One scoop of protein powder. I typically use vanilla or chocolate flavor.* 1 tablespoon of organic cocoa powder, not "Dutch processed" or "processed with alkali" as the processing removes many of the antioxidants.* 3 tablespoons of organic virgin flax seed oil.* 1 teaspoon Psyllium Husk Powder.* 1 tablespoon of Chia seeds, ground just before use. These are a good source of fiber and Omega 3.* A [http://www.amazon.com/Life-Extension-Decaffeinated-Polyphenolds-Vegetarian/dp/B000MYW2ZA capsule of green tea extract], with the powder extracted from the open capsule. I'm not sure if this helps my skin or not, but I suspect there are some overall health benefits.* A little cinnamon or ginger powder for flavor.* Put the ingredients in a blender, and gradually add milk. Let the mixture stand for a few minutes, repeatedly blending so that the fiber absorbs the fluid.
=Further Reading for Medical Professionals=
Warning - these links contain disturbing images and are recommended for medical professionals only.
