Entry Title: "Living Beyond the Stigma of Albinism: Bibiana’s Journey"
Name: Kathleen Gerber , United States
Category and Expertise: Deeper Perspective, Non-Professional
Entry Description: Until recently I knew very little about ‘Albinism.’ This changed when I was introduced to Bibiana. Bibiana is a teenage girl from Tanzania and her dramatic life experiences have thrusted her o advocating a broader awareness for Albinism. When she was 10, while her sister slept, vicious men yielding machetes attacked Bibiana during the night. Her right leg was severed above the knee and two fingers on her right hand were lost during this brutal attack. Bibiana is now 16 and is in the US to be fitted for a new prosthetic leg.
Story: Until recently I knew very little about ‘Albinism.’ I live in the US and have had limited exposure to people with this genetic condition. This changed when I was introduced to Bibiana and Tindi. These teenage girls are from Tanzania and their dramatic life experiences have thrusted them into advocating a broader awareness for Albinism.
- I did not know that, while Albinism is a recessive gene, there are countries with a significantly higher occurrence of this condition. While the US has an occurrence of 1:200,000, countries like Tanzania have rates of 1:1,300.
- I did not know that there are places where Albino children are attacked and maimed for the purpose of harvesting body parts for profit. Tanzania is one of the countries that this superstitious practice is perpetuated by witch doctors and the ‘unknown’ source of funds.
When she was 10, while her sister slept, vicious men yielding machetes attacked Bibiana during the night. Her right leg was severed above the knee and two fingers on her right hand were lost during this brutal attack. Bibiana spent almost a year in the hospital recovering from this attack afraid to return to her home in the Mwanza Provenance near the southern shores of Lake Victoria. News of this horrific attack spread throughout the country and caught the attention of the honorable Alshaymaa Kwegyir. Alshaymaa is a person with albinism, yet she grew up with loving and protective parents. Therefore she did not suffer abhorrent discrimination, stigmatization and even murder. This support formed a stable foundation for Alshaymaa to complete her education and go into a career of civil service and today she is a represented in the Tanzanian parliamentary. Bibiana’s story was so compelling Alshaymaa went to see the girls and ultimately adopted Bibiana and her sister Tindi.
Bibiana is now 16 and is in the US to be fitted for a new prosthetic leg. She is also conducting the physical therapy necessary to get her use to walking with a state of the art articulated prosthesis. Her original prosthetic leg had limited range of motion and reportedly served more like a “crutch.” Concerned citizens and organizations have teamed together to assist Bibiana and her plight including African Millennium Foundation, Orthopaedic Institute for Children, and the Hanger Clinic. In addition Bibiana is working with a physical trainer and has been exposed to athletes and children with prosthetics in order to ensure she has a new outlook in life. It is inconceivable to imagine going through such a horrific experience, yet Bibiana is a survivor striving towards her future.