A song from the musical "Annie" says "You're Never Fully Dressed Without a Smile." The song reminds me of Amy O'Neill. No matter what, each time I see her, she's wearing her signature pearl earrings to feel "dressed" and complete. But those of us who know her, know her completeness comes from her cute little smile, lilting giggle and big heart. I've noticed though, that underneath her bubbly exterior she's a whole lot sadder, and maybe a bit wiser, as her chronic disease, recessive epidermolysis bullosa, continues to progress. For about a decade now, Amy has been dealing with cancerous tumors in her legs and ankles, and there's one that's cropped up recently that is especially painful and threatening.
Broccoli comes from the cruciferous family of vegetables which includes cauliflower, Brussels sprouts, cabbage, kale, bok choy, radish, turnip, mustard greens and broccoli sprouts. While intact, the beneficial compounds found in cruciferous vegetables are not present. Once the cell walls of the vegetables are broken down by cutting, juicing or chewing they convert into enzymes that creates an anti-cancer substance called Indole-3-Carbinol. Although found in other cruciferous vegetables, broccoli sprouts contain 2 to 100 more of the cancer fighting compounds. Sulforaphane is one of the most powerful anti cancer agent found cruciferous vegetables. UCLA researchers found that sulforaphane triggers an increase of antioxidant enzymes in the human airway that may help protect against respirat...
... fatal genetic disease called epidermolysis bullosa simplex (EBS). Researchers at MIT have det...
Like most 5-year-old girls, Fallyn McNamara likes to make craft projects and play with her sisters. But even those ordinary activities are difficult for this kindergartener and new Daisy Scout. Fallyn, of Hempfield, has an incurable genetic disease called recessive dystrophic epidermolysis bullosa, or EB, that affects every aspect of her life.
Pat Schulz is humbled by the outpouring of support for his family. Pat and his wife, Lori, are both Memorial High School graduates. Their children, Sophie and Sam, have a rare skin disease called Epidermolysis Bullosa, a disabling and life-threatening childhood disease. Sophie, 7, is a first-grader at Holy Rosary School. Sam is 3.
I am writing to tell you about a rare genetic skin disease that is present in one out of every 50,000 births -- Epidermolysis Bullosa (EB). The skin -- the largest organ in the human body -- is composed of three layers: an outer layer (epidermis); a middle layer made up of collagen and elastin; and a sub-layer of protective fat that stores nutrients. In unaffected skin, the layers work together to produce healthy tissue that is durable and resistant to everyday wear and tear. With EB, the second layer of skin is genetically compromised. Now imagine having skin so fragile that every touch or even the slightest friction, such as getting dressed or showering, causes severe and painful blisters all over your body. Healthy skin offers protection from outside elements and infections...
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