WINDHOEK - Nearly one year after attending the First Foundation for Ichthyosis and related skin types conference in Nashville, Tennessee, in the United States, 23-year-old Puveri Tjikuua is starting a similar support group for Namibians living with ichthyosis and other related skin conditions.
Ichthyosis is a genetic disorder characterised by dry, thickened, scaly skin. Tjikuua’s skin is visibly dry, dark and scaly. Apart from these symptoms, she sometimes gets cracks and blisters accompanied by severe pain, especially when the skin is infected, she explained in our first interview last year in June.
Tjikuua attended a three-day conference last year from June 28 to July 1 to learn more on the condition and the level of awareness regarding the condition in the US.
“We met the First community, the ichthyosis community in America, the board of directors and people who are advocating for the organisation. They were really open to helping us with information and raising awareness,” she told the Health Focus on Friday.
Tjikuua, who was accompanied by her older brother on the US tour said she also shared the Namibian story in terms of the condition and that it is not as common.
“We told them of the condition here and how it’s not common. They are more aware of it, it’s a community there, it’s not like me where I’m the only one I know of with this condition. They have doctors in the community assigned just to help the people with ichthyosis in the community,” shared Tjikuua, who is passionate about photography.
She is drafting the constitution of the support group, which is entitled Ondenga meaning First in Otjiherero.
“Hopefully by the end of this month I will submit the final draft to the Ministry of Health and Social Services,” revealed Tjikuua.
She wants to advocate for people with skin disorders because she knows what it means to experience stigma, she related.
“Most people are facing stigma and they are not open about it. They are covered up and I want to start a support group for people to actually reach out to me. I want to already start WhatsApp groups and have meetings,” she said, adding that she is working on the modus operandi of the support group.
“For now, I have connected with people from Opuwo with similar conditions. We are planning a trip to Opuwo because there is a mother who has a son living with the condition. So I’m appealing to people who are willing to donate to this initiative by giving winter clothes to contact me,” said Tjikuua.
She explained that in winter her skin gets very dry and cracks even more compared to any other season of the year.
“I’m more prone to infections in winter, which causes blisters on my skin,” added Tjikuua.
Asked what message she has for people with skin conditions, Tjikuua said: “For someone who has a skin condition, I would say being free. People stigmatising and criticising does affect a person but having a positive attitude helps. I would also urge them to strive to live a normal life. At the end of the day, you can’t change the fact that you have a skin condition but then you want to be free and out there living your best life so being free and be open about it.”
She further reminisced on growing up with the skin condition and advised parents with children with skin conditions to give them the best in life.
“It was a process for me growing up and coming to the point where I could freely show my skin the way I do now. There were times when I wanted to be covered up. If I didn’t have my parents’ support I don’t know if I would have been the person that I am now so let your child live a normal live”.
2019-05-13 09:43:02 4 months ago