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Publication Date : 04-02-2014
Patients with rare genetic disorders such as Neurofibromatosis 2 find strength and support in their Facebook communities
Finding out that you have an illness or genetic disorder is tough on anyone, what more when you or your loved one has a rare condition that many don't understand.
That is why many patients and/or survivors of several conditions create support groups on social media such as Facebook.
Neurofibromatosis 2 (NF2) is a rare hereditary genetic disorder characterised by the growth of non-cancerous tumours in the nervous system. Patients of this disorder from all over the world have turned to Facebook to seek out information and support to deal with their ordeal.
Keisha Petrus is a NF2 patient who was diagnosed with the disorder when she was just four years old and has since received several surgeries to remove the tumours.
"As a Malaysian, you are not going to encounter a lot of people with NF2. Hence, to meet people from all around the world who experience the same problems and the same illness as you is a godsend, and Facebook enables that for me," said Petrus.
The 24-year-old says that Facebook does have its limitations and that not everyone will be so revealing regarding the problems they face with NF2.
"Going through NF2 is not an easy thing to do, and everyone experiences problems differently. As such, we might only reveal our vulnerabilities as a result of having this condition to people whom we are closest to - and that's a very hard thing to do with Facebook.," she said.
However, she says that she has made close friends through NF2 Facebook groups.
"To see them living with this illness, rising above it for a higher purpose, that is an inspiration. That pushes me to find my own meaning," said Petrus.
One of Petrus' friends whom she met through an NF2 Facebook group is 40-year-old Mark Sarmac.
Sarmac was diagnosed with NF2 18 years ago and is currently living in Southern California. He is a member of several NF2 support groups of Facebook and have been participating in the groups for the past two-and-a-half years.
Sarmac says that the support groups helps to divulge information regarding NF2 in a social setting, and that if someone needs assistance or support, many members will respond.
"I would say that the main benefit from these support groups on Facebook is that it gives a sense of belonging," said Sarmac.
"It's nice to know people are going through or have been through the same situation as me and we could share advice on what would be the best alternatives for us," he adds.
Sarmac has made several meaningful friendships within the US and internationally through these NF2 Facebook groups.
"It's easier to talk to these people because they know exactly what I am going through and can offer me advice or just offer someone to talk with," he said.
Sarmac recalls being able to meet Keisha and her partner after corresponding with them for more than a year through Facebook.
"I finally got to meet them in real life on their way to Washington, DC for the National Institute of Health study of NF2," he said.
Sarmac also shares that he realised how much stronger he is than he initially perceived himself to be.
"I've learned to adapt to my environment or situation instead of having them adapt to me," he said.
Another NF2 patient, Norma Ortiz from Mexico, was diagnosed in 2011 when she was 26 years old.
"It took me three years to get a proper diagnosis," said Ortiz.
"My first NF2-related surgery was in 2012. When I woke up from surgery I was quadriplegic. It took me 10 months to recover 90% of my normal mobility. This surgery changed my life," revealed the 29-year-old.
Ortiz, who is a graphic designer, is now totally deaf on the right side and has moderate hearing loss at the left.
She now is a member of several NF2 groups on Facebook which enables her to learn more about the disorder, stay connected and share experiences with other NF2 patients.
"NF2 is a rare disorder. Not many people have it. To meet someone in your own country with NF2 is very difficult," said Ortiz.
"It's very encouraging when a NF2 patient get over a surgery, or walk back again. In the end, I understand how does that feel. It's like feeling happy for other's happiness," she said.