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Weekly Trust - - News - From Rakiya A. Muham­mad, Sokoto

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.

Aisha at Hub­bare

Umaru

Dur­bawa

Sau­datu

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