Living with a rare skin disease

Living with a rare skin disorder since birth has not been a walk in the park for 22-year-old Puveri Tjikuua.

She was born with ichthyosis, 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 explains.

She knows her skin is infected when the blisters are big and accompanied by pain.

The condition has also affected her hands and feet. Her feet were covered in black socks. She was hesitant to show us her feet, explaining she is not emotionally ready for that.

Describing the pain she sometimes endures because of her condition, Tjikuua said: It really hurts but I guess I've gotten used to the pain. I know my skin is infected when I have too many blisters.

And when she does not apply lotion, it will be very dry.

But despite her condition, the second year photography student at the College of the Arts is redefining societal norms on living with disability.

In an interview with New Era, the free-spirited Tjikuua shared her experience on living with the condition.

I wouldn't say it's easy. It hasn't been easy at all, she tells us.

Tjikuua has had to constantly deal with people's negative reactions, which in most cases are defined by fear and shock.

From unending stares in public places to cashiers who are afraid to give her change and insensitive remarks such as 'how do you feel when you look at yourself in a mirror?', Tjikuua has experienced it all.

She laughs about it now and says that society reacts strangely to her when they meet her for the first time because they don't understand.

She has also had to deal with bullying, mainly in her early years of school. During her puberty years Tjikuua started to discover herself as a teenager with a disability.

That's when it really hit me that I'm different but that's something I have made peace with, she tells us.

She continued: In primary school I faced a lot of bullying but I sucked it in and it eventually caught up with me when I was in Grade 12, when I was in a major depression.

Tjikuua's parents took her for counselling to manage the depression. Today she copes better with societal pressures regarding her condition, she says.

Part of her coping strategy is to accept that it is fine to feel sad rather than suppress the feelings.

Tjikuua said that her Christian faith also helps her to cope with life's pressures and regardless of how dark it gets she knows that tomorrow will be better.

During the interview she cracked a few jokes and also shared on her love for photography, saying her passion for photography started in her last year of high school.

Starting an ichthyosis foundation

About three years ago, Tjikuua started doing research on her condition. It started from the curiosity of wanting to know and find people with the same condition as me, she says.

She came upon Facebook pages and foundation support groups where people meet up occasionally. In Namibia, the condition is so rare that there is no group for people to meet, related Tjikuua.

Even when doctors meet me they tell me they've only read about my condition during medical school.

But she has come upon a few people in the country with the condition, just not as severe as hers, she notes.

In fact, Tjikuua discovered through research that there are different types of ichthyosis, which range in severity of symptoms, outward appearance, underlying genetic cause and mode of inheritance.

She also came across the FIRST: Foundation for Ichthyosis and Related Skin Types during her research.

Last year she registered to participate in a three-day conference to be hosted by FIRST, starting on June 28 to July 1 in Nashville, Tennessee, United States of America.

Three years ago I told my parents I wanted to go to the conference and when I turned 21 they said I could attend as a birthday present, she explained. The next conference was however only scheduled for 2018, Tjikuua said, adding: I'm going to learn more about the condition at the conference.

In addition, it is a good networking opportunity and she will have a genetic test done to determine the type of ichthyosis she has.

Currently doctors are just saying I have ichthyosis but they don't know what type. Knowing the type of ichthyosis she has will be of assistance because it will aid in better managing the condition.

When she returns, Tjikuua aims to start a foundation for people with similar skin conditions.

Not everyone has the same opportunities as me. I'm receiving treatment but there are many people out there who are not. These people are locked up in their homes � that's the society we live in, she said, adding she is thankful for a supportive family and system.

Source: New Era Newspaper Namibia