Flawless Beauty vs. Normalcy | A Life with NF

Have you ever thought of those individuals who are living their lives away from people, afraid that they will be treated as monsters due to their facial deformity thus prohibiting them to live a life of freedom? In our era where plastic surgery is widely accessible and profoundly abused by people who prefer to look perfect by surgical ‘enhancement’ rather than looking au natural, it’s a rather a sad reality.

As I was watching Discovery Channel’s Medical Anomaly, they featured two individuals who were suffering from Neurofibromatosis or commonly known as NF. These people are born with such rare condition that some consider it as a curse. Reggie and Maurice are just few people who have this kind of genetic disorder, with their faces and legs surrounded with abnormal growth tissues making them look hideous and scary.

Reggie Bibbs (Photo Credit: ScienceRoll.com)

What is Neurofibromatosis?

Neurofibromatosis (NF) is a condition involving neurogenic tumors that arise from Schwann cells and other elements of the peripheral nervous system. There are two types of Neurofibromatosis: type 1 and type 2. Both of these disorders result from a genetic defect in a tumor suppressor protein that regulates cell growth.

NF-2 is characterized by tumors of the acoustic nerve (responsible for hearing sensation). It is much less common than NF-1, occurring in about 1 in 50,000 persons. Most often, the disorder is asymptomatic through the first 15 years of life. The most frequently reported symptoms are headaches, hearing loss, and tinnitus (ringing in the ears). There may be associated with intracranial and spinal meningiomas. The condition is made worse by pregnancy, and oral contraceptives may increase the growth and symptoms of tumors. Persons with the disorder should be warned that severe disorientation may occur during diving or swimming underwater, and drowning may result. Surgery may be indicated for debulking or removal of the tumors.

Now, NF-1 is characterized by the presence of disfiguring neurofibromas, areas of dark pigmentation of the skin, and pigmented lesions of the iris of the eye. NF-1 is a relatively more common disorder with a frequency of 1 in 3000. Approximately 50% of cases have a family history of autosomal dominant transmission, and the remaining 50% appear to represent a new mutation. The cutaneous neurofibromas, which vary in number from a few to many hundreds, manifest as soft, pedunculated lesions that project from the skin. They are the most common type of lesions, often are not apparent until puberty, and are present in greatest density over the trunk. The subcutaneous lesions grow just below the skin; they are firm and round, and may be painful. Plexiform neurofibromas involve the larger peripheral nerves. They tend to form large tumors that cause severe disfigurement of the face or an extremity (Porth, 2007) which is in the case of Reggie and Marcie.

Living with NF

The documented film was shot in Utah and Texas. Maurice Simpson shared his life growing with NF. Abnormal growth on his face started to appear when he was around 5 or 6 years old (estimated age) and it grew more and more until he reached adult life. According to him, living a life looking like a monster is difficult. His childhood wasn’t that all fantastic since everyone teases and bullied him; some thought of him as a freak of nature but he never distance himself away from people. He went through re-constructive plastic surgery before but it made it all worse. After that, he gave up his hope of having a normal facial physique. With all the wasted efforts and hopes that he had invested it was too hard for him to endure but he made sure that he continues to live a normal life as a father and a husband to his wife.

Reggie Bibbs, a resident from Houston, Texas has a different way in dealing with NF. Through his heartwarming story of acceptance, rejection, and the daunting feeling of being treated differently, he inspired NF carriers to face life no matter what other people say and make others realize that people with NF should be treated fairly and not like a freak. With the aid of his “Just Ask!” charity foundation, Reggie was able to spread the awareness of NF by going out into the community and attending large public events to get the word out.

Be Grateful!

Some of us do not feel satisfied of what we look that’s why we resort to plastic surgery, and some use excessive make up to make them stand-out. Instead of altering our facial features and ‘enhancing’ them to your heart’s content, we should be grateful that we are born with complete set of hands to touch and feel, eyes to see how beautiful the world is, ears to listen to our favorite songs, nose to smell delicious food, mouth to speak, feet to walk wherever we want to go, and a healthy body to endure the demand of our every day’s work, cause not all of us are that fortunate! Be grateful for what you have no matter how big or small.

“Some people desire to have flawless beauty but some just wants to be normal.”

-Discovery Channel: Medical Anomaly


Original Article at http://opinionatedperson.wordpress.com/2011/05/26/neurofibromatosis/