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But debra was a safe space My family heard of debra of america when hayden was around 48 hours old. I knew debra was going to be informative, supportive, and help give me the confidence to truly believe we could handle anything and everything that was going to get thrown at us
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To put it simply, debra just really knows what they’re doing. Inform others of the extreme pain these individuals live with everyday of their lives until it finally, sadly takes their life At one point, i reached out to debra of america because the cost of dressings and bandages was becoming too much for my mom, especially with everything else she had to provide for my siblings and me
Debra sent us a huge box full of bandages completely free.
I wish more people knew about this disease With greater awareness and education, i hope people stop viewing us as fragile We are incredibly strong, and this diagnosis does not define us Debra has been a powerful advocate for this community
I’ve seen the lives they’ve impacted, and i’m grateful for the difference they’re making. I'm so happy to be a part of debra, to know that the organization exists and works to improve care and increase awareness I just want to do my part The newsletters and connections to others have made me feel better, knowing that others face my small challenges and that too many are affected greatly.
Thank you for supporting debra of america in our mission to improve the lives of those impacted by epidermolysis bullosa (eb), “the worst disease you’ve never heard of.”
I follow debra of america on facebook and have followed along as my mother followed throughout life wanting to meet others like me I have never met anyone with eb, and i would love to meet others and share triumphs and struggles. As a subscriber, you’ll get exciting research updates, helpful resources, fun event announcements, inspirational stories from our eb community, and opportunities to get involved in debra of america's mission. I was diagnosed with eb simplex at an early age
Eb is prevalent in my family tree, my father, sister, aunt and a couple cousins also have eb Blistering first occurred on my waist, which my father quickly recognized as eb I was fortunate to have my father caring for my eb because of his life experience with the disease Additionally, growing up with my sister, who also had eb and could.
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| all trademarks and brands are property of their respective owners Debra of america does not endorse any drugs, tests, or treatments that. My advice to the world is If you see or meet someone wrapped in bandages due to eb, “come say hi”, do not be shy, we love to talk about eb
