Improving the lives of people with Albinism

Albinism is a non-contagious and genetically inherited condition, which occurs when a child picks albino genes from their parents (even if they do not have any manifestation of the complication). 
It is most characterised by the complete or partial absence of melanocyte cells in the skin, hair and eyes, which is involved in the production of melanin. This makes the person with albinism vulnerable to sun and light exposure. Exposure to the sun can ultimately lead to skin cancer and severe visual impairment.  
Oliver Namuddu did not know much about albinism when she gave birth to her third child. Hearing the nurse say something strange about her newborn was, therefore, confusing. 
“She said I had given birth to a ‘Mukasa’ which did not make any sense since we had not yet named the child or seen it,” she says.
However, on seeing the baby, she noticed the baby was different. She was scared and did not know the next step to take. When she was finally discharged, at home, she was isolated and alone. Different people said she had slept with a ghost, she was cursed and the like. The situation was made worse when her husband left and she was left to fend for the children.
Skin and hair    
The skin and hair is the most recognizable feature on a person with albinism because of their pale colour.
Skin colour is enhanced by the presence of melanin in the body. The skin tends to be very light coloured ranging from white to brown, and so is the hair. Lacking the protective pigment melanin in their skin, people with albinism are extremely vulnerable to severe sunburn, solar elastosis (wrinkling) actinic cheilitis (sore and rough lips at risk of turning cancerous) and solar keratosis (rough areas, which can also turn into skin cancer)
Since there is no cure for this condition, persons with albinism have to protect themselves from sunlight to prevent sunburn and reduce risk of skin cancer.
Dr Henry Ngobi Manson, a dermatologist, says freezing the pre-cancerous lesions on the skin of persons with albinism is the only way of stopping them from developing into skin cancer. 
In line with using frozen nitrogen to freeze the rough areas, Dr Ngobi says wearing clothes that cover the whole body and long brimmed hats to stop the sun from reaching the skin will keep it safe from skin dangers.
In a situation where exposing one to the sun is inevitable, even for a short time, high sun protection factor (SPF) sunscreen could help lessen the skin damage risk.
Once a diagnosis of skin cancer is confirmed, surgery is necessary to remove the cancerous cells.
Eyes
Albinism affects the eyes in a way that the same pigment for bringing colour to the skin is needed to regulate light absorption in the eyes. Since people with albinism lack that, they find it difficult to see things that are far from them or see properly around bright light.
Peter Ogik, the first person to be born with albinism defects in his entire village reveals his plight. Since he looks different, other children did not want to sit near him, which made the teacher transfer him to the back seat.
Because he could not see clearly, he relied on what the teacher said and not what was written on the board. This worsened his performance and he isolated himself.
Ogik’s performance only started improving after his father talked to the teacher and he was made to sit in the front of the class.
Eye movement
In addition to blurred sight, the person loses control over their eye movement, a condition called nystagmus. 
The condition, according to eye health, affects the retina and the nerves behind the eyes. The retina is a layer of tissue at the back of the eye that sends the brain signals about what a person sees. Things look blurry because the retina does not develop the way it should.  This proves to be a problem with seeing in the dark or could even result in dizziness. 
The eyes tend to have a blue or pink colour and the blood vessel can also show through the iris. According to Najib Nkwanga, an optician, this condition cannot be cured. 
“After carrying out tests on their eyes, we give them sensor spectacles or contact lens glasses to help them see properly. When they have an infection, we then recommend eye drops,” says Nkwanga.
The myths 
Besides physical impairment, people with albinism suffer from stigma which stops them from succeeding in many fields in their communities.
This is due to the myths surrounding albinism. This, therefore, disregards the fact that apart from lacking melanin in their body cells, persons with albinism function just like any other person.

Ogik survived three kidnaps, one when he was around 10 years old and the other two when he was a teenager. People believed his organs would help one get rich. 
Alfred Ddembe Walusimbi, a father of six and resident of Nakifuma in Mukono District was happy when his first child was born ‘white”. He said that at 15 years, he had dreamt holding a “muzungu’.
“I knew nothing about people with albinism but when I saw my child, I somehow thought the baby was a God-send,” Ddembe says.

But his father did not have the same feeling. “We do not give birth to such children in our family,” he said. Since he provided shelter to the son and his family, he chased them out of the house to avoid living with a curse.
When Ddembe finally settled in Nakifuma, he got relief. “We lacked a lot of things but the community would give us supplies until we settled in and I started looking for money to support us,” he says.
His second born too turned out to have the same complication as the first although the rest of his four children were born without it. Due to the fact that there is little awareness about this, some communities still believe in these myths.

Help
Albinism cannot be reversed. The only way it can be avoided is when one of the partners is not a carrier. If only one of the parents has an albinism gene, the child may just end up being a carrier and not a sickler. This can only be confirmed through tests.
Due to the fact that high sun protection factor (SPF) sunscreen is costly and rare, it is difficult for a layman to access it leaving many people with albinism at the mercy of methods such as using Vaseline and wearing long garments.

However, through medical camps for Persons with Albinism organised by Every Child Ministries, a Christian charity and mission agency, persons with albinism from different areas receive treatment on both their eyes and skin, follow-ups and sunscreen.
The ministry is also supported by The Source of the Nile Union of Persons with Albinism (SNUPA) and VIVO energy Uganda.