EB | Patient Commando

Overcoming an Obstacle – RDEB-H

Posted on January 28, 2012 by Debra of America

Bruce Gunn

During high school, my classmates were getting ready to take their driving tests and permits. I really wasn’t focused on that during high school and I knew I wasn’t ready. I have Recessive Dystrophic Epidermolysis Bullosa – Herlitz (RDEB-H) and there are a lot of things I wasn’t able to do. My special education teacher said encouragingly that I would be able to drive one of these days and have a car well-equipped with my needs.

It wasn’t until a couple of years later when I was working in a workshop for a non-profit agency for mentally and physically handicapped adults that I finally fulfilled this goal. Being able to drive was a requirement to work outside the workshop and have an opportunity for full time employment. Therefore, I took it on myself to ask a case worker to start the paperwork process to get my first step toward independence.

I knew my dad wouldn’t be able to teach me how to drive because I saw what my two older brothers and twin sister went through and I needed someone with a bit more patience than my dad! In the beginning, my parents had some doubts about whether or not I [...] continue the story

Tagged Under: disability, EB, epidermolysis bullosa, family, genetic, pain, patient, patient story, skin cancer

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My Flesh and Blood 01/06

Posted on December 1, 2011 by Jennifer Chaiken

My Flesh and Blood is a 2003 documentary film by Jonathan Karsh chronicling a year in the life of the Tom family. The Tom family is notable as the mother, Susan, adopted eleven children, most of whom had serious disabilities or diseases. The film itself is notable for handling the sensitive subject matter in an unsentimental way that is more uplifting than one might expect. It was nominated for and won several awards, including the Audience Award and the Director’s Award at the Sundance Film Festival.

Tagged Under: addict, bipolar disorder, chemical, Children, collagen, crib, cystic fibrosis, disorder, drug, EB, epidermolysis bullosa, epilepsy, family, fire, gene, genetic, mother, painful, patient, patient story, psychology, skin, Susan Tom, victim, Xenia

My Flesh and Blood 02/06

Posted on December 1, 2011 by Jennifer Chaiken

My Flesh and Blood is a 2003 documentary film by Jonathan Karsh chronicling a year in the life of the Tom family. The Tom family is notable as the mother, Susan, adopted eleven children, most of whom had serious disabilities or diseases. The film itself is notable for handling the sensitive subject matter in an unsentimental way that is more uplifting than one might expect. It was nominated for and won several awards, including the Audience Award and the Director’s Award at the Sundance Film Festival.

Tagged Under: addict, bipolar disorder, chemical, Children, collagen, crib, cystic fibrosis, disorder, drug, EB, epidermolysis bullosa, epilepsy, family, fire, gene, genetic, mother, painful, patient, patient story, psychology, skin, Susan Tom, victim, Xenia

My Flesh and Blood 03/06

Posted on December 1, 2011 by Jennifer Chaiken

My Flesh and Blood is a 2003 documentary film by Jonathan Karsh chronicling a year in the life of the Tom family. The Tom family is notable as the mother, Susan, adopted eleven children, most of whom had serious disabilities or diseases. The film itself is notable for handling the sensitive subject matter in an unsentimental way that is more uplifting than one might expect. It was nominated for and won several awards, including the Audience Award and the Director’s Award at the Sundance Film Festival.

Tagged Under: addict, bipolar disorder, chemical, Children, collagen, crib, cystic fibrosis, disorder, drug, EB, epidermolysis bullosa, epilepsy, family, fire, gene, genetic, mother, painful, patient, patient story, psychology, skin, Susan Tom, victim, Xenia

My Flesh and Blood 04/06

Posted on December 1, 2011 by Jennifer Chaiken

My Flesh and Blood is a 2003 documentary film by Jonathan Karsh chronicling a year in the life of the Tom family. The Tom family is notable as the mother, Susan, adopted eleven children, most of whom had serious disabilities or diseases. The film itself is notable for handling the sensitive subject matter in an unsentimental way that is more uplifting than one might expect. It was nominated for and won several awards, including the Audience Award and the Director’s Award at the Sundance Film Festival.

Tagged Under: addict, bipolar disorder, chemical, Children, collagen, crib, cystic fibrosis, disorder, drug, EB, epidermolysis bullosa, epilepsy, family, fire, gene, genetic, mother, painful, patient, patient story, psychology, skin, Susan Tom, victim, Xenia