Category Archives: Blog

EB Awareness Tags by Wayne Lemos – Part 4

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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EB Awareness Tags By Wayne Lemos – Part 3

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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EB Is Genetic. Yes, It’s True!

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EB, yes, Epidermolysis Bullosa as it may, it’s probably one of the most misunderstood conditions out there. I wrote an extensive “Common Misconceptions” page long ago and even a long “FAQ page” for those with extensive questions about the disorder. These pages have been up on this website for over a decade, in an effort…

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EB Awareness Tags by Wayne Lemos – Part 2

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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EB Awareness Tags by Wayne Lemos – Part 1

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A super-friend from India, who is a graphic designer and an amazing helping hand for many charities, took the time to do quite a few EB Awareness Tags for this website. I’ve posted quite a few on our Facebook page, and I am now posting them on this blog a few at a time as…

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EB: Disease or Disorder?

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My son Nicky was merely a week old when a good friend, researching the condition, told me emphatically that EB was definitely a Disorder, not a Disease. It may come to a surprise to many when my inner response to that was like ‘whatever’. “Thank You” I replied to her, and never thought about it…

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Until it Happens to YOU!

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The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the…

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Every EB patient is different… no, really!

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When my son was born and later diagnosed with Recessive Dystrophic EB I thought the only difference with him and the other patients was the degree of severity. Actually, I take that back. I did not know there was a degree of severity either, I thought that, like most diagnoses I had known in the…

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May the New Year bring these Wishes to you all…

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May the New Year bring these Wishes to you all… Warmth of love, comfort of home Joy from your children Company and support of family & friends A caring heart that accepts & treats all human beings equally Enrichment of knowledge and richness of diversity Courage to seek & speak the truth even if it…

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How to Help Bereaved Parents

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I wanted to take a moment and wish everyone HAPPY HOLIDAYS, and as a good catholic, MERRY CHRISTMAS! BUON NATALE of, course to my Italian family and friends. I’ve been a bit MIA on this blog, my apologies. I’ve been busy finishing up my book about the story of my precious son I lost due…

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