Catoosa Father Launches Social Network To Connect Those With Rare Diseases
CATOOSA, Oklahoma - A Catoosa man is reaching out through the World Wide Web to help those with a rare disease.
Two of Danny Carlton's children have a genetic disease, and now he's using his talents as a web designer to bring comfort to thousands of others.
Carlton said it's easy for parents of children with a rare disease to feel like they're on an island, all alone. That's why he came up with a plan to connect those parents through the Internet.
He has four children, two of whom were born with a rare disease, Congenital Adrenal Hyperplasia or CAH, which means their adrenal glands do not function properly.
Carlton also designs websites and, for years, he's helped people with CAH connect with each other.
"So a lot of people are from the U.S., one from Canada, from Europe, Asia—we get some from South America," Carlton said.
Carlton's latest venture is to take what he's learned from helping people with CAH and apply that to find other people who suffer from other rare diseases.
"I'm trying to duplicate that service for a whole bunch of other rare diseases and conditions," Carlton said.
Raredisease.org launched this week. You go to the home page and type in the rare disease you're looking for, register with that particular community and the website takes you to a page that looks like Facebook.
There, you can talk with other parents, kids, or support groups.
"And say, 'I'm dealing with this. What do I do about this?' Stuff like that," Carlton said.
He said he knows what it's like for parents who hear that rare disease diagnosis for the first time.
"And when a parent first hears your child has this, they get that panic and they're scared because of all the horrible things that can happen," he said.
The site has 178 rare conditions already listed and Carlton said he has more than 1,000 to go. He doesn't mind the hard work, though, and said it's a way for parents to take control at a very scary time in their lives.
"One of the things that bounces back and forth; we tell new parents, 'You must be an aggressive advocate for your child's health, because no one else is going to be,'" Carlton said.