The Uganda Human Rights Commission (UHRC) recently met with officials from the Vitiligo Association of Ugandato chart a way to join hands in the fight to protect and promote the rights of persons living with the Vitiligo condition in Uganda. The discussions that were made during a meeting between the two organisationsthat took place at the UHRC head office in Kampala on Thursday 6th April 2017 culminated into a plan of action which is yet to be formalised.
The meeting offered a platform at which major impediments to the full enjoyment of rights by persons living with the Vitiligo conditions which include the myths about the condition; discrimination; stigmatization; violence and access to justice were highlighted. UHRC officials who attendedthe meeting were able to appreciate that the myths surrounding the Vitiligo condition in Uganda are the major source of stigmatization and discrimination ofPersons Living with Vitiligoand they mainly include the belief thatvitiligo is contagious and a result of a curse from twins which the other wide is held belief especially common among the Baganda.
During the meeting with UHRC officials, Claire Kigozi and Daphne Walusawho are members of the Vitiligo Association living with vitiligo shared experiences about the condition by giving insights into the facts of the condition and explainedsome of the challenges that they face. The major challenges according to Claire Kigozi are caused by the effect of sunrays on the eyesight and skinof persons living with vitiligo as well as their ability to access justice, among others.
Briefing UHRC about the reasons for creating the Association, Claire Kigozi cited the need for public awareness creation about vitiligo in order to dispel the widespread myths associated with the condition and creation of a platform for Persons Living with Vitiligo and affected persons to share experiences and support to one another. The visiting team also noted that the Vitiligo Association was formed to offer a united voice to lobby government and advocate for appropriate policies such as the removal of taxes on sunscreen goggles and their categorization as essential drugs rather than treating them as cosmetics on realizing that vitiligo was a condition affectinga section of the population who are also entitled to healthcare.
They subsequently proposed a partnership with the UHRCas the National Human Rights Institution (NHRI) which would spearhead efforts to support Persons Living with Vitiligo who face violence and discrimination by documenting such cases and helping them to access justice through the UHRC tribunals system. Joint advocacy was also recognized as key for persons living with vitiligoto access affordable essential health care services including counseling and health care materials such as the sunscreen goggles.
The officer in charge of rights of Vulnerable Persons at the Uganda Human Rights Commission,Ms Priscilla Nyarugoye pledged to continue engaging the Vilitigo Association and other stakeholders to explore ways of assisting persons living with vitiligo to access other services including legal advice and counseling, noting that ‘the partnership between UHRC and the Vitiligo Association will augment efforts of advocacy for better living conditions for Persons Living with Vitiligo.’ Ms Paula Biraaro who is charge of the UHRC Health Unitalso welcomed the proposals presented by the Association and promised to expedite the administrative process which would guide the twoorganisationsin their work of protecting and promoting the rights of Persons Living with Vitiligo in Uganda.
Also in attendance from UHRC was the Focal Point person in charge of Partnerships Ms Rose Mary Kemigisha and the Senior Human Rights Officer from the Directorate of Complaints, Investigations and Legal Services Ms. Rebecca Tino among other officers.
Ms. Kigozi Claire explaining to UHRC officials about the vitiligo condition
Facts about the Vitiligo condition
In an effort to de-mystify the myths surrounding the Vitiligo condition in Uganda which are the major source of discrimination and stigma against Persons Living with Vitiligo, UHRC and the Vitiligo Association agreed to make deliberate efforts to disseminate the facts about the Vitiligo Condition. Facts about the vitiligo condition therefore, include the following:
- The mythabout vitiligostating that is as a result of a curse from twins (common among theBaganda) is NOT TRUE.
- Vitiligo is an acquired disorder of the skin which causes the pigment cells (melanocyte) to be destroyed by the immune system. As a result it causes milky-white patches on the skin.
- It is medically not life threatening but can be cosmetically disabling especially in people with dark skin.
- The condition is not contagious neither is it life threatening. It can however cause serious emotional/psychological stress or even depression. Patients therefore need counseling to cope with the burden of the condition.
- There is no known total cure for Vitiligo, but it is treatable and repigmentation of up to 80% can be achieved after a long time of treatment. There is however, no guarantee that the disease will not re-occur.
- When attacked by the condition, Persons Living with Vitiligo are at a greater risk of acquiring other diseases such as cancer, diabetes, pernicious anemia e.t.c
- Close to 35 million people are living with Vitiligo worldwide. There is however no known study done in Uganda on the condition.
Officials from UHRC and Vitiligo Association of Uganda after the meeting at UHRC Head Office in Kampala.