Epidermolysis Bullosa

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MightyTogether 1y

I'm new here!

Hi, my name is Lisa_B12. I'm here because

#MightyTogether #Anxiety #Depression #Grief #Gastroparesis #EpidermolysisBullosa #Dysphagia

4 comments

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EpidermolysisBullosa 3y

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Hi

This is just a post where you can vent what’s going on? #EpidermolysisBullosa #EpilepsyFoundation #Autism #Depression #DistractMe

2 comments

Story

The author, smiling with her hands and legs bandaged

The Worst Fear I Experienced as a College Student With a Rare Condition

Ariana Covarrubias

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Epidermolysis Bullosa

4y

The Worst Fear I Experienced as a College Student With a Rare Condition

Before I was even born, my body was already covered by wounds that could be easily mistaken for third-degree burns. Before I was even able to enunciate my name, I had to go through surgeries and daily bandage changes that were (and still are) tremendously painful. After minutes of being born, I was diagnosed with [...]

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Ariana Covarrubias

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ChronicIllness 4y

body positivity #Scars #ChronicIllness #Disability #Skin

Hi Everyone I thought I’d share the link to an interview I did for a series of women with different types of skin conditions. I provided my input on what it’s like having a skin disorder in the beauty industry an environment that lacks on diversity. 🦋💓 https : //www.skinstories.us/stories/2019/6/28/meet-ariana-covarrubias ? fbclid=IwAR1httpVZi3zFJatatYFTQYRBZbl01nEbRMR6PQp6lo7qIvQlHcH9Ao5wmA #ChronicIllness #Disability
#Advocacy #EpidermolysisBullosa

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CheckInWithMe 4y

Living with Epidermolysis Bullosa Simplex

People don't respect this condition and the pain the skin blisters cause me on a daily basis. It restricts my life espceically when I can not use my assistive devices prescribed by my doctor.
#CheckInWithMe

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5y

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#RareDisease #EpidermolysisBullosa

My daughter has Epidermolysis Bullosa. She’ll be 20 years old. She is strong, tough, and confident most times. She shaved her head because the EB affected her hair follicles and she grew tired of the wigs and weaves.

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Story

a teenager with Epidermolysis Bullosa

a teenager with Epidermolysis Bullosa

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Epidermolysis Bullosa

5y

Part Three: Darwin’s Orphan - A Childhood With Epidermolysis Bullosa

Part Three: Us Orphan diseases present a dually individual and systematic challenge of how to diagnose, investigate, develop, advocate, finance, and treat for patients within subpopulations of illness. Facing the horizon, the difficulties proposed by orphan disease today resemble similar questions to be presented by a movement towards personalized medicine tomorrow. A differential method of [...]

Story

a boy with Epidermolysis Bullosa smiling in front of plants

a boy with Epidermolysis Bullosa smiling in front of plants

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Epidermolysis Bullosa

5y

Part Two: Darwin’s Orphan - A Childhood With Epidermolysis Bullosa

Part Two: Them For better or worse, this story is not just about John. This story is not just about Faye, nor the tribulations of the subclinical world. This story is not just about Dr. Tolar, nor the challenges of preclinical science. This story is not just about EB. It is a social story, of [...]

Story

toddler with Epidermolysis Bullosa sitting in a basket

toddler with Epidermolysis Bullosa sitting in a basket

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Epidermolysis Bullosa

5y

Darwin’s Orphan: A Childhood With Epidermolysis Bullosa

Part One: Him John Hudson Dilgen hates baths, but he does take them. Lots of them. Every other day, in fact. Yet, while most throw a toe to the surface imagining the possibility of chill or burn, he does so knowing the inevitability of pain. That’s because his baths contain bleach, and many surfaces of [...]

Story

an illustration of a boy releasing glowing balloons and butterflies flock in the sky

an illustration of a boy releasing glowing balloons and butterflies flock in the sky

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Epidermolysis Bullosa

5y

References: A Childhood With Epidermolysis Bullosa

References for “Darwin’s Orphan: A Childhood With Epidermolysis Bullosa,” by Eli Cahan Interviews: (40, 89-119) Boat ea. Rare Diseases and Orphan Products: Accelerating Research and Development: Institute of Medicine; 2010 [Available from: http://www.nationalacademies.org/hmd/Reports/2010/Rare-Diseases-and-Orphan-Products-Accelerating-Research-and-Development.aspx. Howlader N NA, Krapcho M, Miller D, Bishop K, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis [...]