Many people have lost their true identity due to their differences, some have failed to accept who they are due to the stigma imposed on them by society, and some of these are Vitiligo patients. Experts say that Vitiligo is a condition in which the skin loses its pigment cells (melanocytes). While growing up, Joseph Harerimana noticed at the age of 10 that his mother had bleached patches on her skin, but had no idea what they were. Considering he had never seen anyone with such a skin condition, and no one even discussed it, he didn’t know how serious the ailment was. However, as he grew up, he realised that other people actually had Vitiligo, and the patches spread differently with every individual. He notes that when he reached out to some of these patients, they had insecurities and were not living their best lives due to the skin condition that couldn’t allow them to fit in society or wear any clothes of their choice, for fear of exposing the patches. “I knew I needed to help these people, but I didn’t have enough information about the skin condition. I, therefore, carried out research in 2018 with international dermatologists about its causes, treatment, and so forth,” he says. He further notes that once he was equipped with enough information about Vitiligo, he got in touch with Vitiligo patients who shared their stories. He was sure he needed to offer them a safe place-a platform to assist them to air out how they feel and empower them to believe in themselves. It is through that that he started an NGO in 2019 titled, “Anti-Vitiligo Foundation Rwanda”, which is currently located in Kimironko. According to Harerimana, the NGO is aimed to advocate for people with Vitiligo, enable them to get necessary treatment, and spread awareness about the condition to curb stigma. He explains that some people confuse the condition with burn scars, and others believe it’s contiguous, thus isolating those with the condition. He is looking forward to changing people’s mindsets about the disease. Harerimana notes that some people in the villages have sought traditional medication which in the end has worsened or not been effective, which is why he recommends the patients to hospitals that can provide the right medical care. He carries on that he also provides professional counseling sessions to the members of the NGO so that they are able to open up about the condition and socialize amongst themselves. To him, although vitiligo is a skin condition, he believes that it affects one mentally, more than physically. “Vitiligo patients need to be encouraged more about self-esteem. They have opened up that as they by-pass people, they are stared at strangely, that some prefer covering themselves. They need to be reminded that they are beautiful just the way they are. It is not easy, but knowing that they are not walking the journey alone, is what they need to hear,” he says. He stresses that some vitiligo patients have given up on chasing their dreams, as they ask many questions, such as, “Will I ever get a job? Will I ever get married? Am I beautiful enough? among others. Harerimana adds that he is heartening vitiligo patients to stand for their rights, but calls upon the government and Ministry of Health to spread awareness about the sickness and availing effective Vitiligo medication to different hospitals. He says that some patients have given up on medication because they don’t see any change even after taking the medication. One of the challenges that Harerimana is facing is lack of enough financial support to enable him to help the vulnerable vitiligo patients to pay for community health insurance Mutuelle de Santé, find them professional counselors, but also spread awareness about the condition using different forms like visuals, printing shirts, and banners during campaigns and much more. One of his future plans is to target more rural residents since they are the ones who use traditional medicine. The NGO started with two members, it has grown to 50 members, and he wants to reach out to as many people as possible. In February, Harerimana started a campaign dubbed, “I love my skin, but I am not my skin color”, which is intended to empower vitiligo patients to believe in themselves, and that their capabilities are not affected by their skin color. The campaign will end this month. Testimonies Antoinette Bahati says that Vitiligo started as a small patch on her arm, when she went to the hospital to see a dermatologist at The University Teaching Hospital of Kigali-CHUK, the doctor announced that she had vitiligo in 2006. “The doctor informed me that Vitiligo is mostly inherited and that it could either be healed or not. The biggest problem I encounter is stigma from people, they think that I have HIV-Aids and many other myths,” she says. Bahati says that she has learned to live with the condition, she can attend church and other events like weddings ceremonies, when invited. Her message to society is that vitiligo is a disease like any other which is why they shouldnt segregate vitiligo patients because the disease is not contagious. She appreciates Harerimana for giving patients a platform to express themselves. Jean Claude Bizumuremyi first noticed he had vitiligo, when it appeared as a very tiny patch on his lips and that was in 2005, while in senior five. He says that he sought possible medical care at different hospitals including King Faisal Hospital and Kanombe Military Hospital but didn’t get the cure he was looking for. “It is hard living with Vitiligo because everyone you meet has something to talk about you, and most times, it’s false. Some people think I am an alcoholic because the illness affected my lips. I don’t feel any pain on my skin apart from skin color changes,” Bizumuremy states. His message to everyone is that whoever notices any abnormal patch on their bodies or even their children’s, should seek medical support as soon as possible. Bizumuremyi says that if people stop isolating them, they would stop questioning themselves.
