1. Status of children with Albinism in Kenya • Defining Albinism: • Genetic inheritance • Autosomal recessive genes from both parents • If both parents are carriers, they have a 25% chance of having children with albinism • 50% chance that the children shall be carriers. • One can be a carrier and this can be passed on from one generation to generation

2. Manifestation of Albinism • Two types; Ocular and Oculocutaneous Albinism • Skin colour • Hair • Eyes – pigmentation • Eyes – pigmentation – short sightedness

3. Social Implication • Alienation • Family break up – 70% of children with Albinism are from single parent backgrounds • Personal example • Discrimination – Home, school, social. • Opportunity • School – admission, classroom, sitting position, bullying and name calling, self esteem • Father issue – Absent , questioning.

4. Social – Identity issues, relationships • Self awareness • Sexual abuse – HIV & AIDS myths especially girl child • Ritual killings in East African region, name calling and objectification Reasons for killings:- • Wealth • Ignorance • Influence of capitalistic greed and separation

5. Strange that the people don’t ask how comes our members are poor. • Personal security – body parts limbs & private parts • Parents “selling” their children – Migori • Killing their children – case • Child deny stiffles by their mother • Disappearance – Mombasa

6. Social implications Cont… • Albinism case • -Abandoned • Children’s homes • Streets • Trafficking • Rescue • Rehabilitation & schooling -Inadequate legal mechanism - Section 260 of constitution

7. - PDA • Section 27 of the constitution • SNE policy • Albinism friend – lobbying • - yet to be rolled out due to government inefficiencies and lack clear legal mechanism. • Racial pawns – black /White divide but also within the White/White divide – my experience e.g. in England • Basal cell carcinorma – unaffordable sunscreen about 20 US$ a month – high poverty levels. • Lost children as young as 9 years – 14 years • Mutiso his ear had to come off yet he later dies • visible yet invisible

8. Limited knowledge on albinism within the medical field. Not yet enough research being done in eye care and skin care. • Limited levels of awareness • Low participation in social & public life • The voice of the children with albinism not being as visible

9. Progress made in the regions… • Progress – more and more for are trying to address the issue • 1st judge with albinism • Two MPs in Tanzania • PNA – positive having children with albinism • Mali – Chieftaincy • It’s a socio-cultural rights

10. Your thoughts • Awareness?? • Proper legal frameworks? • Role modeling? • Medical facilities • Human Rights Reporting? • Public participation? • Role of Non State Actor/State Actors?

11. Contacts • Mwaura M Isaac National Coordinator Albinism Society of Kenya Special Interest Groups Advisor Office of the Prime Minister Cell: +254721864949/733864949 Mail mwaura.isa@gmail.com

12. THA