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The Organisation Albinism Hypopigmentation (NOAH) describes albinism as “an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and eyes.”
Among other problems faced by albinos, NOAH noted that in tropical countries, people with albinism who did not have access to skin protection might develop life- threatening skin cancers which it said “it’s the abnormal development of the retina and abnormal patterns of nerve connections between the eyes and the brain that cause visual problems.”
50-year-old Aisha Hassan (Nasara) sits at her usual spot along the walkway in Sokoto’s historical hub, Hubbaren Shehu Usman Dan Fodiyo, begging for alms.
The visually impaired widow, who is the only albino in her family, is regularly found there especially on Thursdays and Fridays, as well as on the 27th of every Islamic month when the legendary place typically receives a horde of visitors.
Last Thursday was no exception. Aisha’s very lightcoloured skin and other obvious features characteristic of people living with albinism make her quite conspicuous among other indigent women who are usually stationed there for handouts.
Aisha lives on alms from visitors to Hubbare. She said she was left with no option than to survive by begging. It is five years since she lost her husband.
However, despite the woes which test Aisha’s will to survive, they fail to break her spirit. She leaves home at about 9:00am, usually with her teenage daughter, Hauwau, who chaperones her anytime she needs to go out. From the busy street of Ya Katanga in Sokoto North Local Government Area, Aisha would cross the often clogged major Sultan Bello Road before getting to Hubbare, a few minutes’ walk.
Hauwau does not stay at Hubbare with her. She returns home to come back for her at about 4pm. Sometimes they do not leave until about 6:00pm. That’s when they observe that a number of visitors are still around.
For the seven to nine hours she spends at Hubbare every Thursday and Friday, Aisha only gets between N300 and N500, and on rare occasions, doubles that. She also receives grains distributed by pilgrims. She survives on these through the week until another Thursday and Friday.
Aisha is one of many albinos in Sokoto who the Chairman of the Sokoto State Albino Foundation, Alhaji Abba Galadima Durbawa, lamented were in dire situations.
Alhaji Durbawa said, “Our members are in dilemma due to the fact that they are facing myriad of problems such as health challenges, stigma, discrimination and lack of government support.”
He added that over 80 per cent of the foundation’s 591 members from across the 23 Local government areas of the state were poor and could not afford medication, diet and protection.
Durbawa further lamented that the people living with albinism in the state were neither considered for job opportunities, skills acquisitions programmes nor the state government’s welfare package.
“Institutions deny us admission,” he said, adding that this was despite some of them being NCE and diploma holders.
“The foundation at present cannot do anything for its over 500 members because it is in a financial crisis thereby making many members to live with different health related problems; helpless. We have many of such cases like Aisha’s among our members, but there is nothing we can do about it,” he said.
Just like Aisha, 36-year-old Saudatu and her 25-year-old brother, Umaru, are also the only two with albinism in their family.
“My sister and I are the only albinos in a family of more than 20 children of our father and we are living in privation and with no support,” said Umaru who wanders about looking for charity.
Now that it is harmattan, their lips are charred with blood stains while their delicate skin bears so many black spots from some kind of diseases.
Saudatu got married twice, had four children from the two. The two kids from the first marriage are alive while the other two from the second marriage are dead. She said she struggled to fend for her two children without support from any quarter. She engages in petty business of frying a local snack “kwai da kwai” made from soya beans. It is from this barely N500 business that she takes care of the children.
Aisha, Saudatu and Umaru live in Sokoto Metropolis but most of the albinos in Sokoto are said to be living in the rural areas under more appalling conditions. The foundation established to cater for their plight seems totally helpless with lack of funds.
Aisha said, “My husband and I came to Sokoto city after our marriage and we settled at Yar Katanga area close to the Sultan’s Palace along Sultan Bello Road, where I have continued to live.”
Aisha recalled with nostalgia how she lived a normal life without hitches associated with people born with albinism.
“I ran all kinds of domestic chores like a typical wife would. I pounded millet for fura da nono and guinea corn for tuwo. Even when I gave birth, I went through the usual very hot bath (ruwan zafi) and my tender skin was never affected. You could never tell that I had albinism from the manner I conducted my matrimonial duties,” she said.
Aisha gave birth to eight children, five females and three males. Unfortunately, five of them died leaving her with only three children, two females and a male. The eldest one is a married woman, the second one a male while the youngest, Hauwa’u, is a secondary school leaver.
Aisha’s health travail started when she discovered a tiny sore on her upper lip which was left unchecked.
“Being a tiny thing that I can manage, I did not go to hospital for medical support and decided to ignore it. As time went on, the sore degenerated and continued to grow inward until it consumed my upper lip completely,” she explained.
“The sickness ate deep into my face making a larger part of my nose to cave in thereby leaving a hole which makes life miserable. I was later referred to the Usman Danfodiyo University Teaching Hospital (UDUTH) where they did a skin grafting and mended my mouth. But as I am talking to you now, I can’t hear you properly and I have lost my sight,” she said.
At the UDUTH in 2014, she was diagnosed with skin cancer. The cancer has damaged some parts of her face. She completed her first circle of Radio Therapy successfully.
A medical personnel at the Radiotherapy Unit of UDUTH, Dr. Bashir, said it was mandatory for patients to return for routine check but that Aisha Hassan could not do so due to financial challenges.
“The cancer problem came back and she was once again referred back to us here for the second circle, she checked in on December 24, 2017, and by February, 2018, she stopped coming and we do not know why she abandoned the therapy,” he said.
He, however, said the type of cancer that Aisha had was the one that did not spread to other areas, and that “with adequate medical care and support it can be treated.”
He said cancer treatment depended on one’s condition and that Aisha’s condition could be managed conservatively.
Aisha ’s daughter, Hauwa’u, suffers the distress of watching her mother go through such anguish.
“We don’t have any financially sound relation, all our people either from my matrimonial home or my father’s people, are poor like us and no one is willing to assist us,” Hauwa’u lamented.
The Albino Foundation in Sokoto said it did the little it could by referring Nasara’s (another albino) problems to the Sultanate which financed the five medications she received at the radiology department of UDUTH.
Since the Albino Foundation is a registered organisation under the Ministry of Youth Development and Sports, DailyTrust was at the ministry where the Permanent Secretary, Alhaji Ladan, assured that the plight of the albinos would be looked into.
He promised that the ministry would discuss with the chairman of the foundation about their predicaments for solution, as well as officially take their issue up with the Ministry of Social Welfare and that of Religious Affairs so that they could enjoy some of the state government’s social programmes.