AFFINITY HEALTH TALKS TO GAONE TLHONG MATEWA IN LIGHT OF WORLD VITILIGO DAY
In light of World Vitiligo Day on June 25th, Affinity Health, a leading provider of high-quality healthcare, speaks with vitiligo spokesmodel and founder of Beyond Vitiligo, Gaone Tlhong Matewa, to raise awareness around vitiligo and bring hope to those living with the condition.
Proudly South African Vitiligan, Gaone Tlhong Matewa
Gaone Tlhong Matewa is a wife, vitiligo medical author for published journals, a proud mother of two beautiful busy boys, and an avid marathon runner. She is also the founder of Beyond Vitiligo and Beyond Vitiligo Botswana and the president of VIPOC (Vitiligo International Patient Organisation Committee). VIPOC currently has 22 members worldwide (Africa, Europe and Asia).
Gaone made her mark by being recognised as one of the 200 youngest people making a difference in South Africa by Mail & Guardian. She was also nominated as the class of 2019 Women Making A Difference by True Love.
Born in South Africa, Gaone’s journey with vitiligo started when she was just a toddler. She began developing irregular white patches on her legs that spread to other areas of her body. At the time, the condition was not well known and misunderstood, especially by those living within her community.
“I used to know it as mollo wa badimo, which translated means fire from ancestors. One of my grandparents also suffered from it, and so did my mom’s cousins,” she says, adding that she was only officially diagnosed with vitiligo when she moved to Orange Farm and started a course of skin treatments.
Gaone says her peers often bullied her, and other children taunted her with labels like “chameleon” and “twin colour”. She was made fun of and told she “smelt like a pharmacy” as the ointments she used had such a strong odour.
At age 14, the spots mysteriously disappeared without any medical intervention, only to reappear again when Gaone was 22, following two tragic incidences that occurred while in university.
It took many years for Gaone to accept her condition and love the skin she was in.
“In my late 20s, I went on a journey of self-discovery through seeing a psychologist, doing cognitive therapy, and taking medication. I managed to beat depression and haven’t relapsed in the past 15 years. I know my triggers and how to protect myself from different situations. Vitiligo forced me to go on a self-love journey. I redefined many things and had an honest conversation with myself.”
When she started Beyond Vitiligo, Gaone was looking for a support group of people going through the same thing as her.
“There are so many myths about vitiligo, especially in black communities. People often believe it has to do with some ancestral beliefs – fire caused by ancestors, being cursed, or needing some ritual cleansing. But that is not at all what vitiligo is. It is a skin condition due to lack of melanin.”
Today, Gaone is a wife and proud mother of two children and an avid marathon runner who has competed in two Comrades marathons. She has had the opportunity to work with vitiligo medical researchers and dermatologists that focus more on vitiligo and vitiligo patient leaders.
She has gained in-depth knowledge about the condition and is a member of Global Skin. She has also expanded her knowledge on 54 skin other conditions.
Gaone continues to strive for a better future for people living with vitiligo. She currently works with more than 12 countries in Africa and other continents worldwide in vitiligo advocacy.
What Is Vitiligo?
Vitiligo is a skin disorder characterised by the loss of skin pigmentation and the development of lighter skin patches. It can affect a large or small portion of the body. While skin darkening is the predominant symptom of vitiligo, sufferers may also have hearing loss, eye inflammation, and other autoimmune disorders.1
Despite some beliefs, vitiligo is not linked to cancer, albinism, or leprosy and is neither an infectious nor a physically harmful condition.
Why Does Vitiligo Occur?
Most scientists believe that vitiligo is an autoimmune disorder in which the body’s immune system attacks its own tissues. More than 30 genes have been identified as being connected with a higher incidence of vitiligo.
About one-fifth of those with vitiligo have a close relative with the disorder, but there is no obvious inheritance pattern from parents. When a person genetically prone to develop vitiligo has an external incident, it can trigger the condition, such as sunburn, chemical exposure, emotional stress, or trauma to the skin.
The Origins of Vitiligo
Vitiligo is derived from the Latin word vitulum, which means “little spot”. Ancient writings provide descriptions of what current researchers assume to be vitiligo.
The Ebers Papyrus, an ancient Egyptian medical document, contains the earliest known mention of vitiligo, dating back to roughly 1500 BCE. Descriptions of what may be vitiligo also occurred in an Indian medical treatise about 800 BCE and Greek history around 500 BCE.
How Widespread Is Vitiligo?
Vitiligo affects between 0.5 and 2% of the world’s population. In some geographic regions, vitiligo is more prevalent. While vitiligo is more commonplace in some areas of the world, it can affect anyone, regardless of race, ethnicity, or gender.4
Most commonly, the disease begins during childhood or young adulthood with the onset of 10 to 30 years but can occur at any age.
Varieties Of Vitiligo
There are two primary kinds of vitiligo: segmental vitiligo and generalised vitiligo. Both conditions result from the death of cells that produce skin pigmentation. However, the two categories have distinct physical manifestations.5
Generalised vitiligo:
Generalised vitiligo affects approximately nine out of ten vitiligo patients. People with generalised vitiligo typically develop symmetrical patches of depigmented skin on both sides of the body. Typically, the initial symptoms emerge on the hands, feet, elbows, armpits, and face. Other terminologies for widespread vitiligo include non-segmental vitiligo, bilateral vitiligo, or vitiligo vulgaris.
Segmental Vitiligo:
Segmental vitiligo affects around one in 10 vitiligo patients and is more prevalent in children and teens. In contrast to generalised vitiligo, segmental vitiligo typically only affects one side of the body. Because of this, segmental vitiligo is also known as unilateral vitiligo.
What Treatment Options Are Available?
Currently, there is no cure for vitiligo, although therapies can help some vitiligo patients manage the loss of skin colour or restore pigmentation.
The following are categories of treatment options:
Topical medicines are most effective on the face and upper body, newly acquired vitiligo lesions, and individuals with darker skin tones.
Oral medicines, typically corticosteroids, may be indicated for the rapid progression of vitiligo.
Phototherapy, or light therapy, restores skin pigmentation using various forms of ultraviolet radiation. Phototherapy has been proven beneficial in 65 to 75% of patients, although it needs a significant time commitment to notice results.
Surgery may be an option for people who have not responded to previous therapies. Surgical procedures for vitiligo typically include transferring pigmented skin or skin cells to a depigmented area.
Depigmentation, the act of removing pigment from the skin to even out skin tone, may be an option for adults whose skin is covered with vitiligo patches to 50%.
What Are The Vitiligo Symptoms?
Discoloured skin patches are the most noticeable symptom of vitiligo. Depigmented areas may be significantly lighter than the rest of the body and white, pink, red, or brown.
While vitiligo can manifest anywhere on the body, it primarily affects the face, neck, hands, arms, knees, feet, and genital areas. Vitiligo can also affect the eyes and ears since the cells responsible for skin pigment loss are also present in the inner ear and eyes.
The Emotional Impact Of Vitiligo
Despite living in a modern era, numerous false beliefs and misconceptions around vitiligo still exist, including the impression that the condition is caused by witchcraft and evil spirits across societies.
In addition to vitiligo’s physical symptoms, many individuals experience social isolation, melancholy, and anxiety due to feelings of embarrassment or social stigma. Therapy and social support groups might assist you in coping with the emotional challenges of vitiligo.
Gaone founded Beyond Vitiligo on 25 June 2011. The organisation was named Beyond vitiligo because of the notion that vitiligo has no cure and the only way to beat vitiligo is by accepting the skin condition and seeing beyond the patches.
Today BV is operating as a fully registered non-profit organisation, with CIPC and the Department of Social Development. It has 40 members, including three kids aged three, five, and seven.
Related Disorders
15 to 25% of patients with vitiligo are affected by autoimmune disorders. Thyroid autoimmune diseases are among the most prevalent autoimmune disorders in vitiligo patients. Individuals with vitiligo may also have autoimmune conditions involving the skin, muscles, joints, and connective tissue, such as lupus, psoriasis, and rheumatoid arthritis.
Helping Spread Awareness
June 25th encourages us all to learn more about this misunderstood disease and to remind those with vitiligo that, armed with the correct guidance, support and information, there is no reason why you can’t carve your own route to self-acceptance.
“World Vitiligo Day creates awareness around the bullying, social neglect, psychological trauma, and disability of the people affected by vitiligo. Creating awareness, advocating for better treatment, and highlighting the topic positively is a huge step in stopping prejudice against people with this condition,” concludes Murray Hewlett, CEO of Affinity Health.
About Affinity Health
Affinity Health is South Africa’s leading provider of health insurance, offering you a range of options at affordable rates, including access to the widest national provider network. We understand the importance of having medical insurance that meets your needs, your budget, and your lifestyle. Our range of healthcare products are designed to protect you and your family when it matters the most. We strive to give our clients peace of mind and the highest standard of service at all times. For more information, follow us on Facebook, Twitter, and Instagram.
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