Disabilities in Fiction: Epidermolysis Bullosa

Introduction

Hello, writers and readers. Welcome to Scribe Sundays! The newest and first addition to my blog. On the first day of the week, I will be posting what I have been learning throughout the week in my writing studies, alongside updates about my current work-in-progress's. I hope you all enjoy this chapter of my writing life and learn a thing or two from my own adventures.

Epidermolysis Bullosa: C-D:

One of my primary studies these past few weeks was surrounding a disability, or a disease, called Epidermolysis Bullosa [EB]. I started researching this specific disease because I had learned about it via a television show [ironic, seeing as I do not usually watch television] when a girl with the same disease was being helped by the TV show hosts through a service project. I thought it might be a disease that would fit into one of my stories for a side character of mine, who I will forevermore refer to as C-D.
For those of you who have no idea what EB is, it is a skin disease. It causes blisters, sores, peeling, rashes, and causes severe loss of skin. It creates itching, redness, pain, and makes it impossible to move and walk. Those with EB have a lifetime maximum of around 30 years. I read most about this disease on a website called:

https://www.ebresearch.org/

And I slowly came to realize that this disease, if I wanted it in my story, would take a lot more work than I originally supposed. If used, it would make my character exceptionally weaker than what I was expecting. He would need thousands of dollars in bandages and baths [in a fantasy world] every week, if not daily. Things like running and swimming and even speaking would hurt him and require him to rest afterward [which would hinder the story.] C-D was starting to sound like a hassle character.
All things considered, these ideas made me think that either C-D needed to have some other kind of disease, or he needed to be a Main Character again. Which, at one point, he was. There are two Main Characters in his story. A brother and a sister. He is the brother's best friend. And I took him off the main character's roster. A) because he was too underdeveloped to be a main character, and B) because three Main Characters was too much for this particular story.
So, I got to thinking. And I realized that I wanted to keep EB as a part of C-D's character. I made a few adjustments to the story. Originally, C-D was going to be the supporter of the Primary Main Character and his best friend. That changed. C-D was going to be the caretaker character. That changed, somewhat. I had to accommodate for his needs in the story without taking apart the plot. Giving him the necessities for his health while sometimes forcing them away. And it did not ruin the storyline, while it also represented the struggles that people in reality with EB go through.
I suppose what I am saying in this is two things: One. Stories come with making difficult decisions. If you want a certain idea in your story [like a disease] but you find it hard initially, you cannot outpace yourself by giving up initially. Good ideas aren't born, they are nurtured. You need to grow them. C-D and his EB are a work in progress. I am still learning about EB and everything that has to do with it.
Every day, I am surprised to hear more stories about individuals with EB and how it affects their everyday lives. Baths. Money. Doctors. Pain. Medical bills. Treatments. More. And it has grown my knowledge about how to represent other people with other problems in fiction, which I think is important. I only hope to represent EB properly through C-D's character and his life in my future stories with him in it.
If you want to learn more about Epidermolysis Bullosa, check out the link below.
https://www.ebresearch.org/

~End~

Friends and writers. Readers and geeks. Keep on writing...
...until I write again.