Living with Vitiligo
A woman, whose skin colour started changing at the age of 28, says dealing with the condition has been tough but treatment and therapy have helped her accept it.
Namutenya Shiyagaya was born in Gobabis in the Omaheke region, and she is now based in Ongwediva.
“I used makeup to hide my scar; it is so psychologically devastating, but not anymore,” she said about living with Vitiligo.
She was 28-year-old when she was diagnosed with the condition when she discovered her skin changing into a white, reddish colour.
“I started noticing my skin is changing. At first, I didn’t know what it was, but I quickly learned,” she said.
Shiyagaya narrated the discolouration started spreading to her nose, and then she became concerned.
She said she started searching on the internet about what was going on with her and found many skin conditions online – Vitiligo was the only skin condition she could relate to since her skin was not peeling off but discolouring.
“In February 2019, I got my first check-up with Dr (Emilia) Nghalipoh in Windhoek, who confirmed it was Vitiligo,” she added.
She said Dr Ngalipoh explained to her, what Vitiligo is: (vit-ih-LIE-go) is a disease that causes loss of skin colour in patches.
The discoloured areas usually get bigger with time. The condition may affect the skin on any part of the body.
It can also affect the hair and the inside of the mouth.
Normally, the colour of hair and skin is determined by melanin.
Vitiligo occurs when cells that produce melanin die or stop functioning.
It affects people of all skin types, but it may be more noticeable in people with brown or black skin. She said she knew about the condition just by reading online, so she was not shocked that it was Vitiligo.
“When people look at me, some look scared – and that made me feel sad, very shy – and I had no confidence in myself to be seen around. I was hiding underneath the makeup. It’s so psychologically devastating,” she noted. She indicated the best decision she made was to see a therapist, saying she needed to talk to someone to express herself.
“I kept on going every Wednesday to the therapist. Going there made me get my confidence back. I later moved to the north, and I was worried about what my new colleagues would say or think of me. However, they quickly learned, and they accepted me for me. They didn’t care how I looked, which makes me feel happy and comfortable,” said Shiyagaya.
She further said awkward questions like ‘did you get burned’ were so irritating; some have been telling her she is bewitched and suggested she consulted a traditional healer.
Shiyagaya said she has been trying so hard to be treated.
“I recently met a doctor who gave me new information, a dermatologist in Ongwediva, where I will soon make an appointment,” she stated.
Shiyagaya explained Vitiligo can be a challenge, but she has found support and guidance that led to pride in her skin.
She created a life of her definition, and now, she can’t imagine her journey any other way.
She said she has become a more loving and compassionate women, embracing the stares and directing the attention, when appropriate, to positive ends.
“I would encourage anyone who has Vitiligo or any skin condition to seek help to get that confidence back; it is not the end of the world – but yes, your life will change. Do not let anyone make you feel less about yourself. Seek help to visit a dermatologist – at the private or State hospital – and I encourage you to also see a therapist,” she advised. She further said the way society treats people with Vitiligo makes them withdraw from society and adds to the physical stress they feel.
Society’s behaviour towards them leaves a deep scar on their mind – and many of them become depressed.
“I used makeup to hide my spots until my family and friends told me how beautiful I look without make-up. They taught me how to be confident with myself. I saw model Winnie Harlow and other girls with Vitiligo on Instagram,” she added.
A dermatologist at Ongwediva Medipark, Dr Elisah Agaba, explained that Vitiligo is a skin disease that causes loss of skin colour due to the destruction of melanocytes.
Melanocytes are skin colour producing cells. White patches appear on small or big parts of the body.
The disease can affect even the whole skin/body, hair, inside of the mouth and genital areas.
“Vitiligo can be treated but it has no cure. Treatment can stop the progression of the disease or cause recolouring of the skin. White patches can be re-pigment (getting the colour back) with or without treatment. Several treatments – either for applying or drinking – are used based on patient profile and presentation,” he explained.
He added that what exactly triggers melanocyte destruction is not known, but genetic and environmental factors, as well as stress and trauma, are believed to cause the condition.
“Vitiligo is more of a cosmetic concern than it is life threatening. It is not contagious. It is important to see a dermatologist to exclude possible life-threatening systemic diseases that may be associated with Vitiligo.”
Based on his experience, he said, most patients get to almost complete repigmentation/getting back their skin colour with continued treatment.
He further said severe sunburn has been implicated in the development of Vitiligo, but sun exposure is also used with other Vitiligo treatment modalities.