Albinism, The African Myth Versus Scientific Justification

Senegal, Africa. Most of my lifetime I’ve been involved in helping my community, from soup kitchens, hospital emergency departments, doing makeup for female victims of domestic violence, and collecting Christmas gifts toys for children in Colombia.  Two years ago I remember becoming a hairstylist for a beautiful group of girls that were involved in domestic violence, the irony is for those who know me, I’ve always had  the same pony tail or my typical to the side messy hair because I know nothing about style, however, where there is will and intention, excuses are not permitted.

Three winters ago, I came across an article that was sent to me via text regarding children with albinism in Tanzania. Accepting situations for what they were instead of questioning them did not work in this situation, I was heartbroken.  For moments I thought I was maniacal, I wanted to help! I recall writing to several organizations and non of them responded. I remember signing up to a people with albinism dating site, however in simple words, it did not work. One day I read an article about three mutilated children from Tanzania placed in a Staten Island medical center for care, I immediately called the Tanzanian embassy and the medical  center for an interview, which was granted  however, the day before the interview  I was told it was cancelled due to security and safety.

Looking back at the situation after reading a few albinism forums I came across Mike Gowan. Mike mentioned  a friend from Senegal living in NYC that’d be able to help. I must admit  my longing diminished hope lit a bit.  Three weeks later thanks to Mike, I met Aboubakary Sakho and since Abou And I have been working together compiling ideas for the cause.

2B7EE646-EC26-4AFE-9B45-D22E3257FDF7The author and Aboubakary Sakho in winter 2015 (left) and now.
Photo: The Stewardship Report.

People with albinism in Africa are segregated from their local communities. Children born under this genetic condition are culturally unappreciated. A social malediction is how people under these features are seen. Albinism is a recessive trait, the lack of melanin privileges people to promote false traditional and cultural beliefs fencing people with albinism dignity by persecution, torture, and murder. Witch doctors are known to pay high rates for their victims limbs, the extremities are used to prepare potions and rituals to be sold as lucky charms.

A boy with albinism in Senegal receiving medical attention
through ANPRAS in 2013
Photo: Aboubakary Sakho.

Statistics  display women giving birth to a child with albinism are damned, threatened, and discriminated. Eighty percent  of marriages end in divorce, without a choice, subjective mothers are forced to leave the house. Families are unaware that in order for a child to be born with the recessive trait, both parents must carry the gene.

For the past three years I, Lina Escobar, have been working with ANPRAS (Senegalese National Alliance for People with Albinism Promotion and Insertion). ANPRAS, was established on March 2004, in Senegal by Aboubakary Sakho. The management initiated an educational awareness plan for the community by developing activities and obtaining number ratios for the albinism population.

Lamentably, children are not enrolled in schools due to cultural misconceptions. The figures helped for an educational insertion program which started with two children on March 2004, leading to a current net of eighty six enrolled students.

With a challenged avenue from all directions, ANPRAS, has been able to promote diverse activities and conferences with a scientific approach with conclusive results. Teachers are being trained to be pedagogically ready to accommodate and assist the children with their sight limitation  and special needs.

On June 4, 2018, Aboubakary Sakho, President of ANPRAS and I attended a meeting in Southside hospital with Dr. Jayman, Dr. Antoine, and staff to discuss our educational and medical concerns regarding skin cancer with people with albinism in Senegal and Tanzania.

C0F9E614-F753-4ECF-8179-64B97F7B8731The author with Dr. Jayman, Aboubakary Sakho, Dr. Antoine, and
Southside Hospital staff. Photo: The Stewardship Report.

ANPRAS, realized that many of its members are deceased with skin complications due to skin cancer. In 2007, a medical program was designed to provide medical attention,  it was unfortunate not to save every life nonetheless, the program became successful with a cure rate of 50 people under treatment. Progress has been made however, for many  the only flip side of endurance for people with albinism in Africa is to beg on the streets in a continent where the reputation of high climate and UV densities outstrips  120 degrees Fahrenheit.

On August 18th, 2018, Dr. Jayman, Dr. Antoine, wh0 donated fifty book bags with school supplies goodies, and Southside hospital staff organized  a picnic sunscreen and book bag drive for ANPRAS. Our mission is to spread awareness through education regarding misconceptions and provide medical attention. We are  looking forward for more donations, such as cream based sunscreens, book bags, basic school supplies, umbrellas, long sleeve shirts for children ages 5-12, sun hats, and sunglasses. In every book bag, the idea is to have a child  handwrite an inspirational letter to another child with albinism in Senegal and Tanzania, perhaps get a NYC public elementary school classroom to do this, to create a moral  support goodness chain.

Book bag sunscreen drive at Belmont state park.
Photo: Lina Escobar.

3547B4FA-1D51-4594-AEB6-E2F87E960921More book bags donations pick up at Dr. Jayman’s house.
Photo: The Stewardship Report.

ED92B7E4-5C20-4C93-ADD5-4A3F5225E61ALina Escobar and Aboubakary Sakho on August 29, 2018.

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Lina Escobar
Studied neuro-muscular studies at Staten Island College. Lina Escobar, is a member of the J. Luce Foundation Global Leadership Initiative. She is originally from Palmira, Colombia. When Lina-attended BMCC, she was the first person to open a branch Lions Club. “MiraVe”, Lions Branch Club provided breakfast to underprivileged children in her hometown. From reading to the elderly, volunteering in the ER department ,and planting 5,000 pine trees in Marine Park, writing collaborations with Colombian writers and directors have been rendered through a program provided by the embassy of Colombia in New York.

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