The purpose of the FaceSA Project

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A number of people have been asking me what the purpose of The FaceSA Project is. Well, The FaceSA Project concept is an extremely diverse one and it doesn’t just focus on one area. The reason for this diversity is because of the absence of many different aspects in South Africa which need attention.This is a basic overview of our mission:

FIRST AND FOREMOST:
1. Promote the ACCEPTANCE of visible facial differences
2. Promote medical technology to help treat these conditions. (Some of which are used on a daily basis globally)
3. Promote multi-disciplinary teams to treat complicated facial conditions. Inter-disciplinary, craniofacial teams could perform complex surgery such as facial transplants.(This is also already happening globally)
4. Educate others about facial difference conditions
5. Encourage patient support resources (Eg. Support networks & books available locally)
6. Provide a platform for facial difference patients to share their story & give hope to others
7. Encourage access to information which allows patients to manage their conditions more independently and effectively

 

We don’t offer surgical correction of facial differences, however we do promote the amazing non-profit organizations who do. Our focus is on the issue as a whole which includes patients who cannot be helped by surgical intervention. Some of these conditions like those caused by a rare disease can be life-threatening. In these cases, to face a judgmental world is never possible, therefore we are encouraging acceptance so that they can also try to live normal lives.

Let me first start by saying, I have had excellent success with my facial reconstruction and I speak very highly of our doctors here in South Africa. There is sometimes a very negative perception of what we are capable locally, but to put you into my perspective, one of my doctors is seen as one of the world’s best and situated right here in Sunninghill.

I am a facial difference ePatient and an advocate. What does that mean. Well, firstly, I have spent the most part of a decade in the South African medical system reconstructing my severe disfigurements after a car accident. I educated myself through every resource I had available so that I could understand what was happening to my face and to my health. This came in many forms, one was through numerous face-to-face medical consultations, the other, like most patients do, was by doing extensive online research. Both options had a set of challenges. The consultation was great because I could ask questions immediately. I admit though, some visits I felt a little rushed. A doctor’s time as we all know is extremely precious and as a patient we respect that. So, to save time, I often found myself recording my questions into my phone’s notes the night before. Perhaps this was a fear that I would forget something and then have to bother the doctor again afterwards with 1 silly question which was causing me immense distress. I ended up typing out my medical history too, just so that I didn’t have to repeat it and take up extra time. I had a really complicated history to explain.

Funny, I came across a few doctors who always gave me a pre-warning when I was diagnosed with something. A good example was when we found MRSA (Methycilln Resistant Skin Infection) on my cheek implant. My medical pre-warning went something like, “Now don’t you go google on the internet, the information there is not accurate. You’ll panic for nothing”

Okay, now, honestly, like any other human, I did the opposite, I researched for months online. When someone tells you that you have a “deadly flesh-eating mutated bacteria living on an implant inside your face”, well, “freaking out” is sort of a natural reaction. As a patient, that “over-reacting” is naturally caused from a lack of understanding. It’s a terribly, helpless position to be in. Having the facts available can really help to ease that panic for a patient.

Internet isn’t the best place to find information to diagnose yourself, some information is dispersed by others who may not have the right qualification. Also, alot of negative, over-dramatized versions may exist. The thing is, as a patient, we need that information available to us. We need to know what is happening to us. We need to have that control over our bodies.

Being able to ask other patients is a huge hope giving aspect. I believe that this is why online support groups and patient communities are so valuable.

As an #ePatient who has been following emerging medical technology trends globally, I hope to see this innovation emerge in South African health too in the future, so that we are not left behind while the world progresses.

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