Difficulties I experienced as a Facial Difference patient in South Africa

Medicine doctor working with modern computer


Where do I begin?

I had a car accident in 2004 and next to the damage I did to my face, I also had massive abdominal, pelvic, back & neck injuries. Check out the full story here: (My Facial Reconstruction in Johannesburg, South Africa)

It has been almost a decade of facial reconstructions and in the same breath I have fought abdominal complications which nearly took my life last year. Anyway, the positive side is, I have survived it, I look acceptable now and I am so grateful that I am “sort of” in one piece.

There are so many facial difference cases out there worse than mine and that was one reason I chose to become an ePatient advocate. I have the advertising knowledge, the internet skill and the passion. As the saying goes, “if you have the power to help someone else, you should do it”.



HERE IS A LIST OF SOME DIFFICULTIES I ENCOUNTERED ON MY JOURNEY IN SOUTH AFRICA AS A FACIAL RECONSTRUCTION PATIENT:

1. WE DON’T HAVE ENOUGH AWARENESS ABOUT CRANIOFACIAL SURGERY & MULTI-DISCIPLINARY TEAMS:

The extent of my facial damage was extremely complicated and in some instances I required a multi-disciplinary team. This is not a very common concept in South Africa, because we only have a small handful of craniofacial doctors. Globally, multi-disciplinary, craniofacial teams have formed. Some are performing facial transplant surgery which is putting those countries onto the map in terms of medical breakthrough.

It is not always necessary to have a multi-disciplinary approach, but if the surgery is very complicated and it involves working with different tissues like skin, bone, eye, nerves etc, you need different specialists who work in those “tissue specific” areas.

Video by Dr. Catherine Mazzola, Pediatric Neurosurgeon at Goryeb Children’s Hospital and Director of the Craniofacial Center about what a craniofacial team is:

Because of the little awareness in South Africa about craniofacial teams, we have little investment. There is an incredible craniofacial program at the Sunninghill hospital in Johannesburg who are in need of funding desperately.
Please visit their website to read more and please donate if you can:
Johannesburg Craniofacial Program

Here is a video from one of the international pioneers of facial transplant surgery in Boston:

Why are facial transplants necessary, from Brigham & Woman’s Hospital
TedXBoston Talk with Dr. Bo Pomohac

 

There are easily 70-100 craniofacial teams now in the United States alone. Face Transplants are starting to take place globally. In terms of South Africa, with enough investment, I hope we can also get to an international level. We have world-class surgeons who just need the recognition.

 

2. SUB-SPECIALITIES OF A SURGEON ARE NOT CLEARLY DEFINED.
TERMINOLOGY SHOULD BE STANDARD AND FOLLOWED BY A GLOBAL DESCRIPTION

I was a little confused as a patient, I had no idea that there were different sub-specialities.
Plastic surgery includes sub-specialities eg. micro-surgery, craniofacial surgery and cosmetic surgery. I called the associations and figured out that I had over 100 plastic surgeons to choose from, half of which didn’t have an online presence, and those who did, didn’t always clearly list their sub-speciality or the description differed in some way which confused me even further. This can make the decision process very difficult for a patient and also result in loss of time. I had to consult face-to-face and ask questions to understand. (This is not just an issue for plastic surgery, but only an example)

As a patient, I also didn’t understand my anatomy. Words like zygomatic arch and orbital floor were close to a foreign language and I spent a long time online trying to understand the anatomy in my face.

 

To demonstrate what I mean about the complexity of the sub-specialities in plastic surgery alone,
here is an extract taken from
Wikipeadia: http://en.wikipedia.org/wiki/Plastic_surgery#Sub-specialties 

Plastic surgery is a broad field, and may be subdivided further. In the United States, plastic surgeons are board certified by American Board of Plastic Surgery and the American Osteopathic Board of Surgery.[21][22] Subdisciplines of plastic surgery may include:

BURN

Burn surgery generally takes place in two phases. Acute burn surgery is the treatment immediately after a burn. Reconstructive burn surgery takes place after the burn wounds have healed.

COSMETIC

Aesthetic surgery is an essential component of plastic surgery. Plastic surgeons use cosmetic surgical principles in all reconstructive surgical procedures as well as isolated operations to improve overall appearance.[23]

CRANIOFACIAL

Craniofacial surgery is divided into pediatric and adult craniofacial surgery. Pediatric craniofacial surgery mostly revolves around the treatment of congenital anomalies of the craniofacial skeleton and soft tissues, such as cleft lip and palate, craniosynostosis, and pediatric fractures. Adult craniofacial surgery deals mostly with fractures and secondary surgeries (such as orbital reconstruction) along with orthognathic surgery.


HAND

Hand surgery is concerned with acute injuries and chronic diseases of the hand and wrist, correction of congenital malformations of the upper extremities, and peripheral nerve problems (such as brachial plexus injuries or carpal tunnel syndrome). Hand surgery is an important part of training in plastic surgery, as well as microsurgery, which is necessary to replant an amputated extremity. The Hand surgery field is also practiced by orthopedic surgeons and general surgeons (see Hand surgeon). Scar tissue formation after surgery can be problematic on the delicate hand, causing loss of dexterity and digit function if severe enough.

MICRO

Microsurgery is generally concerned with the reconstruction of missing tissues by transferring a piece of tissue to the reconstruction site and reconnecting blood vessels. Popular subspecialty areas are breast reconstruction, head and neck reconstruction, hand surgery/replantation, and brachial plexus surgery.

PEDIATRIC

Children often face medical issues very different from the experiences of an adult patient. Many birth defects or syndromes present at birth are best treated in childhood, and pediatric plastic surgeons specialize in treating these conditions in children. Conditions commonly treated by pediatric plastic surgeons include craniofacial anomalies, cleft lip and palate and congenital hand deformities.

 

***In the case of a facial difference curated website, I believe it would make sense to list a specialist in the area as well as list the sub-speciality and a global description as to what it is and when it is required.
(In Technical terms: **Link the term to a globally used online dictionary or medical wiki)

 


4.PATIENTS WILL ALWAYS SEARCH FOR INFORMATION ONLINE

You can’t stop patients from wanting to know more about their condition and the internet is the place we all turn to first. Like every patient, I spent months researching for a treatment online so that I could make the right decision about the specialist and treatment.

We drove around Johannesburg for months to the best surgeons. I ended up seeing an Ocular plastic surgeon (Ophthalmologist working with the skin in the eye area), a micro-surgeon, a craniofacial surgeon, and a maxillofacial surgeon. I battled to find the surgeons online and relied on referrals from other doctors. I wrote to overseas doctors and was so fortunate to have a reply from one of the top surgeons in New York and another in Boston, who took the time to Skype me and consult as to the steps I needed to take. Isn’t it crazy thought that I had to go to those lengths when some of the world’s best surgeons are right here?

I didn’t know where to turn. Every opinion differed in some way, they all had different consequences and in the end after a year of appointments, tears, confusion, hopelessness and fearing a failed surgery, I went ahead with an amazing world-reknowned professor and plastic surgeon in Johannesburg. I believe though I wasted a good year or two of my life trying to put the pieces together.

Nobody expects doctors to understand how search engine index systems work and the importance of online visibility. Some websites simply don’t get into an index for a number of reasons and I see this as an issue too. Getting ranked means you appear on a page, be it first page or last page of search.

Imagine you search for a condition and get a return of 1, 464748 444, what a massive task to sort through all of that?

I won’t get too technical in terms of websites and search engines, but what I will say is, when a patient searches for information about a condition, it should be easier to find. If I search “Arthritis” and I am in Johannesburg, every resource available to me locally should be curated on one reliable source.

Imagine the time I will save and surely my outcome will improve because I can make a more informed decision.

I can imagine how frustrating this must be for a doctor when a patient comes into his office and has a “self-diagnosis” based on the internet. Unfortunately, the internet IS growing and patients WILL keep searching.

 

 

5. VISIBLE FACIAL DIFFERENCE APPEARANCE DISCRIMINATION

Because facial difference conditions are not spoken of openly, some think it is an isolated problem. Some think that it is an insignificant problem and that it is rare. I experienced a lot of prejudice during my years of disfigurement and it made me so sad to think that kids growing up were experiencing that too. In South Africa especially, as there are many spiritual stigma’s attached to a facial difference. Children can be isolated in back rooms in rural areas away from sight. In the case of a severe patient, they sometimes don’t leave their homes because of the terrible public reactions that they suffer.

Video about disfigurement and the impact it has on their daily lives, by the Changing Faces Foundation U.K – http://www.changingfaces.org.uk

It is important to know that not all facial differences can be corrected by surgery and some individuals live their whole lives without access to surgery, counselling, support and education about their condition.

.

6. WHAT DO I HAVE AND IS IT A DISABILITY?

The term “Facial difference” is relatively new and is being reviewed globally as a term which many hope replace other terms such as facial deformity, facial disfigurement and those which carry a negative connotation. Facial Difference is also not clearly defined as a disability in South Africa. However, I have come across a recent article which broadly explains disfigurement.

My facial difference as a disability article can be read here:
https://vanessacartersa.wordpress.com/2013/11/01/facial-difference-as-a-disability
Insight is really welcome.

This is a good friend in the U.S, Dawn Shaw, Author of “Facing up to it” who writes about her experiences there:
http://www.facinguptoit.com/2013/06/03/facial-difference-connotation


7.AM I ALONE?

Because I never saw others like myself, I lived a terrible life of isolation at times. One day I came across an incredible international facial difference community on Facebook, initiated by Kateri Jo Cana, U.S.A and I gained so much hope to know that I wasn’t facing this condition alone. The group has over 300 members and patients can join at https://www.facebook.com/groups/151761438232421/

Patient communities are so important for the emotional well-being of a patient.

 Video from Kerri Morrone Sparling, ePatient advocate for Diabetes. Follow her @sixuntilme on Twitter.


We have incredible N.P.O’s in South Africa which I promote as much as I can. For these children & adults who can’t be helped I hope South Africa see an improvement in terms of acceptance of visible differences and that my online efforts encourage innovation in medical technology to treat these conditions.

My opinion is that we have incredible potential and a world-class country with world-class doctors. We need to open our minds and be positive about what we can achieve. We need to focus on what our top priority is as a nation, our health. The world isn’t waiting, technology isn’t waiting. Most of it is already available, but we are not using it.

Insight for this article would be great! So please add a comment if you are visiting.

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