[by Florence Bryan]

Hickson, who lives in Columbia, S.C., worried it would be difficult to find a support system of families who also have children with mitochondrial disease. With two other children to take care of, she didn’t know if she would have enough time to reach out for advice, guidance and companionship.

Mitochondrial disease is caused by dysfunctional mitochondria — the parts of cells that generate most of the energy for the body — and has a wide range of severity levels and symptoms, including muscle weakness, developmental delays and susceptibility to infections, according to the United Mitochondrial Disease Foundation. In William’s case, the disease affected his development, and, at 5 years old, he has the physical and mental abilities of an infant.

Unlike diseases that have received more publicity, such as autism and Down syndrome, mitochondrial disease has not gotten much attention.

“You don’t just meet people on the street with kids who have mitochondrial disease,” Hickson said. “Even though mitochondrial disease is really not that rare — it’s one in 200 — but it’s just not very well known.”

Faced with this challenge, Hickson decided to log on and seek out friendships in the online community, especially through her Facebook account, which she created in September 2008.

“To be able to connect with people — even if it’s just through Facebook — who know what you’re going through, it’s nice to know that they’re there, even if you don’t see them or talk to them every day,” Hickson said.

An array of resources

Parents of children with disabilities, like Hickson, often turn first to Facebook as an online tool to seek out others in similar situations, because many are familiar with the site.

With more than 1 billion active users per month as of September 2012, according to the site’s recently released statistics, Facebook provides an enormous network of human resources.

Hickson said she doesn’t use Facebook only to spread awareness and find other people affected by mitochondrial disease, but it has been a helpful tool to do so. One of the first Facebook groups she joined was the United Mitochondrial Disease Foundation.

On any given day, her page includes status updates on her family and William’s health, pictures of her children and links to fundraisers for mitochondrial disease.

Because she is not limited by geographical boundaries when using Facebook, she has met parents of children with mitochondrial disease from across the nation and beyond, even becoming Facebook friends with a person from Canada — although she said they haven’t had much communication.

Instead of answering a random advertisement, Hickson used her social network connections and bought a wheelchair-accessible van from a family whose child with a disability no longer needed it.

“Of course I would much rather buy a van through somebody like that,” she said.

Kris Shields, who has two children with low-incidence disabilities, or disabilities that are less common in a given community, said she benefits from the breadth of social networks, connecting with parents from Washington, Michigan and Pennsylvania.

“It’s amazing the information you can get,” she said. “Just a few years ago, families wouldn’t have had that.”

Like Hickson, Shields has a 7-year-old son with mitochondrial disease. Because of the range of ways the disease presents itself, she has been able to connect with parents of children with very similar symptoms, which might not have been possible among the 15 families in her hometown of Charlotte, N.C.

“You can get so specific, it’s unreal,” she said.

This specificity is also important to her because Shields’ 13-year-old daughter has an undiagnosed condition with various complications, including blindness, mild hearing loss, a blood disorder, scoliosis and tremors.

She has been able to find doctors and other resources for her children, including a mitochondrial disease specialist in Atlanta and another in South Carolina, through local and national support groups on Facebook and Yahoo.

Shields participates in groups with input from doctors, specialists and therapists so she can consult professionals directly about complications her children are having, she said.

She said she appreciates the advice she receives from groups with professionals, but also likes to maintain membership in online groups composed solely of parents.

“There are times when you need to go to parents to vent and speak and not have someone try to come and fix it,” she said.

Tailored to needs

Certain social networking sites are specifically tailored for individuals and families with disabilities and other needs.

Michael Radicone, a behavioral therapist who focuses on special education, created one such website called eSpecialMatch.com. On this social network, users can create a profile, which they then use to connect with other users, post stories and pictures, blog with therapists, create events and seek out resources in their area.

Radicone, who is based in Long Island, N.Y., started the site about 2008 to connect families with one another. Since then, it has grown to about 3,000 users — 1,000 of whom are highly active. Users include relatives of people with disabilities and businesses that offer services for people with disabilities.

Radicone said he hopes that sharing knowledge on the site about the numerous quality services available in states such as New York will empower people to ask for more disability rights and services in their home states.

“If families know what everyone else has, then they are more apt to fight for what they can get,” he said.

Most of the users on eSpecialMatch.com are affected by autism because Radicone visits several conferences held by autism advocacy organizations to share information about the site, but he welcomes people with all kinds of disabilities.

About a year and a half ago Radicone added another feature to the site — user profiles for adults with disabilities. The profiles for those people have most of the same features as the other eSpecialMatch.com profiles except a few parts of the profile’s layout are locked in to make it easier to use.

Radicone is not alone in realizing that social media sites need to be more accessible to people with disabilities.

A 2012 study based on feedback from 49 people collected by Media Access Australia, an organization trying to improve social media accessibility for disabled people, found that sites including Facebook, LinkedIn and Twitter were inaccessible to some degree for people with disabilities. Despite some sites’ willingness to accommodate more users, the review found that many lacked features, such as compatibility with assistive technology products and captioned video, that would make the sites user-friendly for those with disabilities.

Sites such as eSpecialMatch.com and disabilitysocialnetwork.com have emerged in an effort to meet the needs of people with disabilities.

Another site, Parlerai, offers unique features that allow parents to communicate with their disabled children using pictures and symbols on the site. Created by two parents of a young daughter with disabilities, the carefully protected site also has functions for managing a child’s medical records, scheduling appointments and communicating directly with health professionals.

From online to in-person

The connections that people and families affected by disabilities build on social networks go beyond the computer screen and lead to in-person meetings and friendships.

Tara Pitts, who has a 4-year-old son with autism, said she uses Family Connections, a secure social networking site, to meet other parents with autistic children who live near her home in Columbia, S.C.

“They help place you with families if the child has the same diagnosis,” she said.

Parents and children meet once a month at events that have been planned on the site.

Shields said she uses the Mommies Network, a nonprofit organization that connects mothers who live in the same community.

“They have a special needs forum so that was instrumental, and I connected with another mom of a child who was blind,” she said.

The two mothers grew close and have since become advocates for blind services in their community, starting an after-school program that serves about 12 of the 72 blind children in the Charlotte-Mecklenburg School System. They also received a grant to send 11 teachers and administrators to the National Federation for the Blind to learn how to use technology to more effectively teach blind students.

“Both of those were direct results of this mom and I being part of an online group and connecting with one another and realizing what a need there was,” Shields said.

“If you can connect with a group of people, that’s when you can really start to facilitate change.”

Hickson, Pitts and Shields have also each used social networks to recruit volunteers and donations for fundraisers that benefit people with disabilities.

Arising challenges

Although social networks have become useful tools for people with disabilities and friends and family of disabled people, online interaction is not without risks.

Radicone said his site gets hacked about every three months, and he constantly patrols the site to weed out insincere or predatory users.

Because the site is smaller, it is easier to police than a large site like Facebook, he said.

“(Facebook is) almost too big of a pool of people, and you don’t know who’s out there,” Radicone said. “At least if you’re on eSpecialMatch, you kind of know who is on there already.”

When users sign up for eSpecialMatch.com, they answer a questionnaire and provide an email address, and, if Radicone or another user notices a profile that is inactive or appears suspect, Radicone temporarily puts the profile on hold and sends the user an email.

In some of Shields’ online groups, there were individuals who took bits and pieces of other members’ stories and pretended to have a disabled child. She said these people threatened the entire group, and it was important to expel them as soon as possible.

“That’s another reason to be really aware of who’s in your group,” she said. “You’ve got to have a really good group who’s willing to act when something like that happens.”

Shields said she has shared information about her children’s path to diagnoses so that other parents can use it as a roadmap, but she is cautious not to share too much personal information.

“Once it’s shared, you can’t take it back,” she said.

A teaching tool

While keeping in mind the risks, parents and people with disabilities are finding more tools than ever before on the Web.

They educate each other, but they also educate friends and family who otherwise might not know much about certain diseases and disabilities.

Hickson said Facebook is a fast, simple way to keep everyone she knows in the loop about William’s health and other family news.

“When there’s stuff going on, that’s just an easy way to tell people what’s going on without making a lot of phone calls,” she said.

She said she shares information about mitochondrial disease on her Facebook profile, especially during Mitochondrial Disease Awareness week in September and in the weeks leading up to the Energy for Life Walkathon, which benefits the National Mitochondrial Disease Foundation.

Hickson said her friends seem more interested in learning about mitochondrial disease from her perspective. Spreading awareness through all platforms is critical to finding a cure, she said.

“Unless you know somebody with mitochondrial disease, you’re probably not going to seek out the information or learn about it, unfortunately,” she said. “We don’t want people to say, ‘What is mitochondrial disease?’”

With the help of social networks, Hickson said, she imagines a brighter future for her son William and other children with mitochondrial disease — one that’s as bright as the yellow and orange logo for the mitochondrial disease walkathon in her Facebook default picture.