Albinism and Pakistan


I decided to take my six year old cousin, Sana who suffers from albinism to the Valima ceremony with me. She was looking really pretty with her pink shalwar kameez  and her beautiful white hair held with beautiful hair clips. She beamed at me and i smiled at her. We sat on our respected seats, the farthest ones from the stage, where the resplendent bride sat with the beaming groom. Our choice of seats was based on the fact that we had entered pretty late in the venue. I had an evening flight from Karachi to Lahore, and catching up with relatives meant that i entered the venue at 9:00 p.m. just an hour away from the end of the ceremony.

So there we were, ammi, me and Sana taking in the beautiful lights, the bright clothes of guests and my eyes followed my lovely friend. It was her brother’s wedding and believe it or not, we were meeting for the first time. We had been online and phone friends for ages and i had used the excuse of her brother’s wedding to come down to Lahore and finally meet her.

Back to Sana, mom and me. This was the first time i was meeting Sana too. She is a bright, confident and very, very loving child and i was enjoying spending time with her. This enjoyment though was short lived. Within minutes, children started to point at her and whisper to each other. Some came close as if to inspect her and continued staring at her. Some laughed and some ran here and there to tell other children about the strange girl with white hair, white eye brows and pink eyes. None however attempted to speak to her, ask her name, ask us about her , or called to her to play with them. They just stared and stared and stared at her. I tried to talk to a few children, coaxing them to shake Sana’s hands, talk to her and play with her, but by then Sana’s confident personality had shrunk to a troubled child, with her head down and a blank stare on her face.  My mother could not take it anymore and scolded the children away.

Soon dinner was served, and we whisked Sana to the dinner table. She did not want to eat anything. I got some nice kulfi ice cream for her, knowing that a child cannot refuse ice cream. But she did. By now ammi and me were concerned and started to softly persuade her to try a spoonful. Within seconds, she started crying. Ammi and I exchanged alarmed glances. Thankfully, her father, who is also my uncle, and who had also come to the ceremony with us, appeared out of nowhere and took Sana in his arms. They strolled away into the main hall of the ceremony which was empty by now.

Later on, we learned that she was upset because of the way the children treated her. She wished she was brown and not white, then no one would look at her this way. *sigh. heart-break *

My uncle held her and told her that she should never feel this way because Allah has made her very beautiful and that is why she is so extra ordinarily special. He told her that other children were just jealous and curious , because they had never seen someone so beautiful. I quipped in, that she looked just like a Barbie doll, so obviously the children couldn’t resist themselves and just had to look at her to admire her.

Next step was to advise her of how to behave when facing such a situation.  She needed to smile. She needed to introduce herself. She needed to shake their hands and then suggest any particular game in her mind to play. If they asked her why she was white, or why her eyes were pink, then she could tell them simply that Allah made her different  because she was very special to him and that he wanted everyone to look at her and appreciate HIS beauty. :)

Sana and i became great friends , and if it wasn’t me , who was hugging her, it was her hugging me. :) But this episode made me wonder about the life ahead of her and the things she would have to face. It also made me wonder about those albino children who perhaps don’t have supportive parents or don’t find the answers to the questions that plague their mind  so easily.

For those who don’t know about albinism, it’s a is a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the production of melanin. Albinism is associated with a number of vision defects, such as photophobia, nystagmus and astigmatism. Lack of skin pigmentation makes the organism more susceptible to sunburn and skin cancers. So predominately, albinos have pale skin, white hair, white eyebrows and white eyelashes, along with pale  blue/ pink pupils in their eyes, owing to which they cannot directly stare at the sky and sometimes it can get even worse. This is the reason albinos are usually seen wearing dark glasses. Sana too has trouble seeing things on the blackboard in her class at school despite the powered spectacles she wears, but the teachers in her school are very supportive.

Sana tries out my shades

‘ Sana tries on my shades ‘

What i really want parents to do is educate their children to accept people different from them whole heartedly. Children must be taught to accept and appreciate diversity in all senses, and especially to never, never and i mean never, make fun of people who are not like them.

I decided to search the internet for support groups for Albinos in Pakistan and i did not find There did however exist a webpage for the Albinism World Alliance .

To quote from the website here: http://www.albinism.org/awa.html

“ The Albinism World Alliance (AWA) is a network of albinism support groups in various countries. The AWA was founded in 1992 by representatives from Australia, Canada, Tanzania, the United Kingdom, and the United States of America. The AWA has grown to include albinism support groups in Germany, Mali, Malawi, the Netherlands, Puerto Rico, Norway, and South Africa, and other countries.The objectives for the organization are:

–          To serve as a network of albinism support groups,

–          To share information regarding albinism,

–          To promote awareness of albinism internationally

–          To promote development of albinism support groups throughout the world.

–          To share information about technology that will benefit persons with albinism.”

Interesting and very well planned,  I must say, especially since people suffering from albinism face a lot of discrimination and bias to the extent of it being life threatening around the world. For example, in African countries such as Burundi, Nigeria and Tanzania, “White”,  is considered to be a curse from god(s)” and therefore considered abnormal. Some say that being born an albino is a curse for the mother, who has supposedly been unfaithful.  Owing to this reason, many albino children are murdered upon birth.  They may also be killed for magical purposes to be sold for potions in particular to traditional healers and “witch doctors” in rural areas. Thankfully, this is not done or believed in AlhamdulilAllah.

There is infact a unique Albino Village of Bhatti Tribe in Rural Sindh in Pakistan , where there is a large number of Albino inhabitants. If you want to read about them, please click here:

http://www.sid.ir/En/VEWSSID/J_pdf/90420090202.pdf

Typically most of the inhabitants are unaware of the implications of their conditions and the precautions that they should take to avoid the medical complications of albinism.

I worry about Sana . I worry about these people and i worry about the thousands of Albinos around the world who not only have to go through the medical problems associated with albinism but also have to fight against the inherent stereotypes and discrimination.

May Allah s.w.t save them from the blood thirsty fools who don’t realise that we are all made by Allah  and hence flow from the same source and are equal in his eyes, save for who is more pious than the other,  and just because someone has a medical condition or is different from the majority, does not mean that they are in any way inferior. Hmph!

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42 thoughts on “Albinism and Pakistan

  1. You’re so cool Sam…to bring this to light :) I can so totally relate to Sana’s situation…with my 17 year old son being a Cerebral Palsy child. I take him everywhere with me….and people stare….I smile back. I cannot explain it to everyone present at the park….. My son is not so shy …he goes out in the street , talks to the chowkidar..tries to talk to the boys his age who are playing cricket there…….and you know what ? those boys stand in the corner then and talk and laugh. As a result , he becomes withdrawn and very quiet, stops eating.. He becomes insecure…doesnt let his sister out of his sight and doesnt sleep in his room…. Pakistani moms…they need lessons on compassion to teach their progeny.. All my love to Sana….and like I commented on her facebook photo you put up…. May you never forget to smile like this when you grow up…Ameen.My heart goes out to Sana’s parents and her teachers are the coolest :)

    • Thank you for such a lovely post Saman and sharing your experience. Sana has an elder brother, who not only suffers from Albinism, but is also autistic. They, AlhamdulilAllah , though have another daughter, who suffers none of the ailments. I think it’s a test from Allah and that parents like you , who take proper care of their children will InshaAllah go to Jannah. Ameen . Summa Ameen.

      • Dear Safire, Can yous share some of your research material or anything in that regards or do u have your facebook? im only breadwinner of family with 3 brothers who are through that albinism, very tense because of them and their future,,,

      • Hi. I am 41 years old and an albino by birth. I have always lived with very weak eyesight but I always struggled and I am blessed with academic achievements by Allah. I have five Master Degrees and also MS in Finance, and I am a college teacher by profession. There was a time when all in society around me including my parents, relatives and teachers thought differently of my future. But today, all in society around me regard and respect my abilities and academic fineness. This is how we humans can achieve confidence with Allah’s help and our untiring struggle.

        Azhar Iftekhar
        District Rawalpindi

  2. Pingback: [ Albinism and Pakistan ] « SaFire Meanderings | Network World Alliance

  3. Wow she has grown since the last time I saw her. It is partly the fault of parents for not teaching their children better. And the fact that children can be cruel sometimes.
    Here is hoping she gets ample support from friends and family as she is going to need it all.

  4. It is heart wrenching the way those children behave, I have moist eyes trying to be in Sana’s shoes. You know, no one wanted to play with me when I was very young, I really don’t know the reason, but I wasn’t allowed in the privacy of children of my age, so I used to sit on my terrace grill, dangled my feet, sang my own songs, but naught play with them. And it hurt me, it thoroughly hurt me, and even a grown up me lack that something – but I agree I wasn’t white like her, so no one really made fun of me – so I am multiplying the pain that I went through to project my pain, and its unbearable!

    I have a hint of how it feels when you’re rejected because of your appearance. Either physical, either of your own choice of wearing something.

    Although now I am more rational to understand the biasness and to alienate myself from other peoples view – she isn’t! too young to probe the depths being ridiculed for nothing.

    I really pray for her, that she be protected now and she grows up this way, that she learn to have her head high and never loses her self confidence. Also reminds me of this woman, whose doctor, when she was born (without legs from knee joint I think) had said that she would not be able to walk, and she would in her life, ended up becoming the fastest (record breaking) runner.

    Do tell her about that.

    Love to you sum baji. You shall always continue to be the inspiration for me :) InshAllah!

    • Dear Asbah,

      Thank you for a thought provoking post. Your a lovely person inside out, and if children alienated you when you were ittle wittle, then let me tell you, it’s their loss, because had they gotten to know you, they would be humbled by your kindness and would have learned so much from you. Each life experience has something to teach us, and i am sure that yours was full of learning too. One thing is for sure, you would never alienate somebody or treat them in such a way so as to make them feel unwanted.

      Love you too, little sister and as for inspiration, the feeling has always been mutual. :)

  5. Kids will be kids and rightly so the parents should educate the kids to accept everyone,however different they maybe.But i guess its just not in most of us.

  6. when i was in college there was this girl, a new-comer hailing from interior Sindh. Although,she didn’t have any ailment or any disorder which would make her socially standout from others but she was hell of a bully and quarrelsome lady all time trying her best to intimidate her colleagues and teachers for not so apparent reason. she seemed utterly an ignorant person and this i am not exaggerating; we all were truly astounded to see her attitude and her lack of literacy on any aspect and that how come she got admitted to this college and on what basis! you wont believe she was the only girl who sat in the front row of the classroom and nobody dared to sit with her at any cost.. and dang! i was the only girl who dared make friends with her. in actual, there were reasons i took such step: first i found it utterly abominable when people belonging to such elite and educated class so clearly avoided and just ran away from her, fearing that might she take out a hiss on them and that would freeze the blood running in them duh! hw wholesome of the matter was i didnt like people’s behavior towards her and believe me when i sat with her, talked to her, asked her about her aggressive behavior in an amiable manner she was like an open book to me, acknowledging this herself to me that she didnt belong here, and all about these quarrels and fights its all routine stuff back there in interior. she was so upset about the behavior of others with her in this college she was almost suicidal! my friends never approved me of this affair and didnt reach for me until she was terminated from the college.. i still recall her and just think how social behaviors just effect your personalities.. nobody has this right to humiliate and make others feel so degraded which could lead to destroy their mental status and lives.. strongly condemnable and abhorring :(..

  7. Hi Sam,

    I also have one albino child in our family who is only 1 yr old. He is healthy and very very cute but you are right people dont spare any chance to hurt his parents. I wish all the albino children and people a normal life which is becoming difficult for them because of the society. Thats very sad actually.

  8. i had tears in my eyes while reading this. Summaiya baji, i have always felt that sana and sami are the most beautiful children i have ever seen or met in my life. not only that their complexion has always attracted me but i think that they have some extra qualities and skills (music in Sami’s case) that make them more special.
    i love them both and i dont know why but sami has always been a favourite cousin of mine :)

  9. very thought provoking post Summ. It true that children are among the most racist creatures, but that is not say that its a child fault rather its the parents responsiblity to inculcate the Islamic teaching of equality and how all thing are created by Allah and hence no one is better than any one else.

    this cousin of yours is MashAllah very beautiful, but I fear for her. She will need to become strong and not lose hope in Allah. She will need to tackle such situations with a smile on her face and vigor and gusto. It will take time for people to appericate her but with Allah’s help.

  10. I just got linked to your blog and I’m glad I did.

    Children (and adults) can be so cruel sometimes!
    I went to a school which had a Special School unit in the same campus and I was terrified of all those ‘special’ children and made sure never to play around the special school building.
    But now I have a cousin who has cerebral palsy and another cousin whose daughter is autistic. And I’m so ashamed of my behaviour towards those special school students. May Allah forgive me.

    Being different is so difficult especially in a world where folks are scared of ‘people who are different’.

    Oh btw, I had an albino friend here in Mumbai and now Alhamdulillah, she’s happily married.
    So it can’t be all dark, inshaAllah.

    Can you tell your cousin Sana for me that she is such a pretty child? =)

    • Thank you for visiting my blog Faiza. You should not feel ashamed. It’s your school’s administration which should feel ashamed. They should have arranged for integrated events between the two units. It’s natural to feel scared and unsure. I have gone through the same sentiments many a times, but i always keep them in check, knowing that i really shouldn’t feel this way. but we are humans at the end of the day and have our lessons to learn. :)

      I passed on the message to Sana last night and she was delighted. Thank you.

  11. i just want to say that she is beautifull and she should keep her head up always. back here in Ghana we also have albinos iknaw how it feels to be an albino (not that i’m an albino or anything)but i’m also fair fairer than anyone in the class at school so other kids albio.but i have been able to pull through and i have friends who love me for who i am and i want to tell Sana that she will too and i’m praying for her.

  12. my name is sadiq nwaz and i am also an albino. i am a university student and am facing the same problems. i am considered as an alien. people stare at me they make fun of me. although its a medical problem but illiterate people have made it a social problem. the discrimination with which albinos are treated is terrible.
    beside the above mentioned problems i have come across another very serious threat for albino patients. the present anti American and anti European sentiments in Pakistani society is a great threat for albinos. i am from Khyber pakhtoon khwa and the presence of anti american and anti westeran elements in that area have made it impossible for me to live over there recently i got a call from Afghanistan for a job and they were offering me a handsome salary but i could not go there because of the fear that the people of that country will take me as an American agent.
    your work for the albino patients in Pakistan has encouraged me a lot. i have a mind to do something for the albino stricken people of Pakistan.

    • It is sad that you have to face such discrimination. I feel for you. But, i am happy that you have decided to speak up for this and think about the other albinos around you, especially those living in Khyber Pakthtunkhua. Good Luck in your life both personally and professionally. Just recite Ayat ul Kursi as much as you can and InshaAllah you will be safe.

  13. hi I am KY an Albino.
    i have faced my fair share of discrmination from friends and foes alike but i have been lucky with great family and friends arond me to support me. I am well settled with a prestigeous Job in Karachi; I have a lovely and supportive wife who is not an Albino i also have 2 lovely daughters who too are normal and take after their mother; i must say we should never loose hope i know it is difficult but we should not. I have alos faced a lot of ridicule initially i would get angry and hurt but learnt to smile and have a laugh about it.
    Please tell the beautiful chil d not to worry Allah will have something great planned for her and he will take care of her; tell her never to let go of Allah.
    May Allah bless her and us All
    Love & Dua KY
    PS: i am all for setting up a society for the betterment of Albinos

  14. me & my sister & brother suffering from same issue, that people make fun of us but these smile become part of life moreover for us after the age 24 life become miserable to live in this society. this society even not accepting us.

    • I completely understand and feel your pain. However, if it is any consolation, an albino acquaintance of mine studied law went abroad to further her education, dyed her hair and eyebrows ( i assume through a professional skin specialist or cosmetologist). She is now married and recently gave birth to a cute baby boy. Have faith and stay strong and optimistic. :)

      • Hi
        Read your comments. I too am an Albino and have suffered my fair share but never gave up today when i write this note i am married to a NON ALBINO and have to perfectly beautiful daughters also am working in a seniorleadership position in a multinational research firm. All i can say is do not let these ignorant people let you down hold your head high and fight it out and most importantly have Faith in ALLAH

  15. I m also suffering from albinoism when i read about sana i felt that some one is talking about me. I m 24 years old n living a normal life. My mother who was my my best friend is now not wid me. I lost her 5 years ago. She was so proud on me n gave me ful confidence that i m absilutly normal. When i had any problem she stood wid me. I got 84% in matric with my hardwork n in intet also now i had finished my education after doing B.com n now after my mothers death im suoporting my family just like my mother n im performing her duties. I have also a loving n caring feunce. I just give a message to all albinos that don’t’ feel bad about u. U r the best u can do any thing with ur self confidence . Always thanks to ALLAH

  16. I really appreciate the post. Thanks for bringing these problem into light.
    Being an Albino I would like to add something.
    In my opinion Parents and Teachers play most vital role in imparting confidence to these children, especially the Teachers.
    Teachers should try to treat these children like normal ones as far as possible. Parents and Teachers must accommodate them if they fall in some kind of emotionally disturbing situation.
    Early schooling cam make a difference, because it can raise or shatter the confidence level of the child.
    Really sorry for those who are not able to attend school.
    Thanks again for this article.

  17. Eray ! No worries girl. Don’t you know what Junaid Jamshed said ?

    Goray reng ka zamana kabhi hoga na purana gori der tujhe kiska hay ? Tera tau rang gora hay :)

    Let the fools mock. I have strabismus — an eye disorder which makes it hard for me to see straight with both eyes. However, we should remember that we humans are very resilient creatures. A thick skin and confidence is all we need to deal with the morons out there.

    Stay strong young one ! We’re all beautiful in our own way.

  18. Assalam o Alaikum

    I am an albino by birth and suffering from weak eyesight since early age. My education is Masters in 5 subjects and also MS in Finance. My only issue is eyesight and I am fine on skin colour. I shall be thankful to you if you can kindly research and recommend any cure or medicine for Albinism related eye weakness.

    Best regards,

    AZHAR IFTEKHAR
    azhar751@gmail.com

  19. Dear Sapphir, really nice article, I’m having same problem these days bcz my babydoll, (daughter ) who is almost 3.5 years old.
    these days she’s having problems of harifall and dandruff. pls let me know if u have can tell me any good shampoo /conditioner for her?
    thanks
    asif@ahtml.com.pk

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