Norwegian Sickle Cell Anemia Organization
Report 210
Improving the Quality of Support:
In 2010 unlike previous seminars in 2008 and 2009 respectively, the main aim of the 2010 seminar was to establish a network of volunteers who can provide useful information as well as practical and emotional support to children and young people who are living with sickle cell disease in NORWAY.
This year seminar drew participants from various countries in Africa than last year, nine (9) countries were represented, (approximately 40 people turned up). The countries which were represented are: - Congo, Uganda, Tanzania, Nigeria, Somalia, Ghana, Kenya, Eritrea and Norway.
The Program Leder: Neneh Bojang, MKBK/PAWA
The presenters:
Agatha Oiginere, Project Manager, NSCAO as main presenter, on brief history of NSCAO and stigma, a power point presentation on vision, mission and the stigma surrounding sickle cell sufferers and their care providers. Click here for more info. (pdf to follow).
Churchill Odiero, introduction of NSCAO`s Youth Forum Support Group, to inform NSCAO youth who are young and do not know/understand yet what it means to have sickle cell as a chronic and hereditary blood disease that is inherited from both parents; and that it is important to know that Sickle Cell Anemia is not CONTEGIOUS but just HEREDITARY.
He informed the participants / audience that having sickle cell while attending school can be tough for most kids, when they lack support from teachers and fellow students while others have support they need to make it through each and every school year. He further emphasized that most schools do not know/understand how it is to have sickle cell anemia and how sufferers deal with everyday life. He continued to mention that this can go beyond their training, tests, gym, examination and how they have it at school; If the school teachers, fellow students and friends do not know what sickle cell is and why they often aren`t at school. He felt it is very important for sickle cell suffers to talk schools about their status to help them get along better at school by explaining to their peers why they are often not at school. He emphasized that school is a place where they go for good education and at the same time make new friends and to have fun said Churchill.
Benter Adiambo, Project Coordinator; NSCAO as co-presenter on social consequences spoke of a greater understanding of sickle cell and thelassemia is an important starting point in developing more and appropriate and accessible care. She expressed that examples of good practice, in both health and social care, do exist but stressed that the potential of such interventions, however, is rarely realized and lessons remain poorly disseminated.
She also mentioned Individuals with sickle cell and thelassemia disorders, and their families, encounter various psychological, social and material challenges. That there is considerable variability in the way individuals respond and adapt to these challenges, with no apparent clear association between severity and psychological adjustment.
The stressed that the participants needed to understand how sickle cell affects the sufferers daily life, like how it affects their sleeping, eating, being able to move around, motions and feelings, and the way they spend time with their families and friends.
This was then followed with an intensive workshop led Neneh Bojang who handed out the workshop questionnaires to help improve in our efforts. This was well received, and all present participated in filling up the questionnaires. The workshop gave a very positive picture of NSCAO`s work in General.
Seminar Hoped to achieve the following outcome:
To reduce the social
level of social isolation felt by many young
people
To boost their
confidence and self esteem
To link children and
young people into community
To make and meet new
friends
To establish long term
sustainable social relationship in the mainstream
community
To find out what is
like to live with sickle cell disease from both adults and
children.