I am a woman with a facial difference, also known as a facial disfigurement. I am an advocate and an #ePatient for Facial Difference.
I am a #HCLDR (Health Care Leader) on Twitter and participate weekly with the U.S.A in the online health discussions which include both patients and doctors. What is a #HCLDR (Health Care Leader) ? Read more here from The Health Care Marketer USA, Dan Dunlop
In June 2014, I was invited to attend the Doctors2.0 & You congress in Paris (www.doctors20.com – #doctors20), in association with Stanford University, where I had the opportunity to meet the international healthcare social media experts and learn about how social media, web2.0 & new technology is being used to change medicine.
“Vanessa Carter is one of the exceptional ePatients I’ve had the great privilege to know thanks to my work with Doctors 2.0 & You. She has turned a personal challenge into the opportunity to be one of the brightest lights around. She is creative, hardworking and generous”
– Denise Silber, President of Doctors2.0 & You, Paris (www.doctors20.com | #doctors20) & Basil Strategies
Stanford School of Medicine Presentation Healthcare Leader Tweet Chat 2013
by: Lisa Fields
I live in Johannesburg, South Africa. When I was 19 years old, I started a company called Artext. It’s a small advertising business in Johannesburg, we’re about 5 in a small office. We specialise in designing & brand management for small businesses. I’ve always been one of those “arty” types of folk that everyone thinks is a little different, but I’m okay with that. Honestly, I’ve been pretty proud to be unique for most of my life. I have always believed that being different is what defines a leader, so I model myself on that being an entrepreneur. I have 2 amazing boys, Stephen who is 18 years old and Riley who is 4 years old. They are the light of my life.
I practically live on the internet. I guess it is my job, but something about it fascinates me. Social media is such an amazing way to network and meet other like minded people. In 9 years of my facial reconstruction, I never met another patient, but on social media I am networking with people on a daily basis globally.
I got my facial difference in a car accident when I was 25, it almost cost me my life. I’ve spent the majority of 9 years in court, at doctors, doing medical reports (32 of them), recovering and in surgery. It’s been a huge part of my life since that day, but I have learnt to make the most of it and my attitude towards it, is that what WE believe, is what defines OUR future.
Having a facial disfigurement is not easy. It takes a tremendous amount of courage everyday to face a society which is sometimes very judgmental. There are alot of bullies out there and well, not enough knowledge and awareness about these conditions.
I have a belief that awareness exposes people to our different appearances and because of that others can become more accepting. You don’t see people with a facial difference often., so when you do, you almost don’t know how to react. Most people would look down and avoid eye contact feeling uncomfortable.
So what type of awareness is needed? Acceptance, knowledge of conditions, encoragement to share ideas and innovation in medical technology & research to treat these conditions. Many people are also not aware that some of these facial conditions are life-threatening. I met a beautiful little 8 year old girl online who lives in Cape Town. She has Facial Scleroderma. Scleroderma is a rare disease and can appear anywhere on the body, it disintergrates tissue. It will eat the bone & flesh on her face. Besides having the most incredible strength to deal with this medical condition as a young girl every day and being back and forward to hospitals, she tries to live a normal life, even with bullying and comments she has from being different.
Locally and internationally many people suffer from the stigma and shame, afflicted not only by the physical trauma of the facial change, but the
judgement and sometimes fear of those around them. Some people are hidden away in society for many reasons and it shouldn’t be the case.
Another goal of the FaceSA Project is to encourage the formation of multi-disciplinary medical teams who treat and operate on complex craniofacial patients in South Africa. According to my reading, in the US alone, there are already more than 70. Multi-disciplinary teams also forming globally are able to perform facial transplants.