Sickle Cell Advocacy and
Management Initiative, SAMI has launched a transformative, multi-faceted,
patient-centric initiative to improve outcomes for individuals with the
disease, both in the rural areas and across the nation, by bringing together
stakeholders in the public and private sectors committed to significantly
improving the state of SCD worldwide.
In line with the global vision of
advocacy for improved health system for persons with SCD, SAMI regularly
converges a team of professional though leaders for its monthly XTRA CARE
CLINIC
According to the convener,
Oluwatoyin Ibidunni Adesola, the XTRA CARE CLINIC is a free medical clinic that
holds basically every third Saturday of the month (except for the changes
occasioned by unforeseen issues like the Covid-19 pandemic).
“The purpose is to alleviate the
challenges the underprivileged, who live with Sickle Cell Disorder, face in
managing their health.
“In a country where Sickle Cell
Anaemia Disorder is an inherited blood disorder that affects over four million
people (the highest in the world) with an estimation of the 150,000 who are
born annually, of which only about 25% of them live to see their fifth
birthday. .
“Through interactions, with
people living with SCD and their families (via personalized care through our
free medical outreach) we have seen an increasing number of social, economic
and psychological difficulties sometimes resulting in suicidal thoughts or
worse, death.”, she said.
Starting in 2016 at an initial 40
members, the clinic has grown to over 600 members, with an average of 150
attending the clinic. To deal with the
issue of post clinic care, poor access to health facilities and sometimes
abandonment, some beneficiaries have also been placed on health insurance.
A reduction on hospital care and
financial pressure have also been seen among beneficiaries who attend the
clinic.
Launched in 2008, the vision of
SAMI is to build a society where Sickle Cell Disorder (SCD) is reduced and
people with sickle cell and their families are able to lead healthy, positive
and productive lives.
With beneficiaries which include
children, young people and parents of people living with sickle cell, SAMI has
touched the lives of over 5,000 people and over 1,500 young people have been
empowered and educated on Sickle Cell issues through various projects.
Beyond raising funds, SAMI is
committed to ensuring that individuals with SCD have access to high quality of
care and is currently in the process of developing and implementing a
multi-pronged strategy to expand health care professional education and
training on SCD.
Activities are aimed at four key
audiences: haematologists, patients, hospitalists, and primary care clinicians.
XTRACARE Free Clinic (a monthly
free clinic that provides free medical consultations, drugs and tests for
people living with sickle cell and where we also provide health insurance to
some people with sickle cell disorder.
SAMI is headed by Ms Oluwatoyin
Ibidunni Adesola, a survivor with first-hand experience of the challenges faced
in living with the disorder. She’s been living with the disorder for over 50
years. SAMI has an excellent culture and does her activities according to best
practices for an NGO under the supervision of seasoned professionals including
Mr. Foluso Phillips of Phillips Consulting (Chairman of Philips Consulting),
Mrs Tope Jemerigbe (Managing Director of DKK Advertising) as well as other
volunteers/advisors.
For all her life, Toyin has been
committed to ensuring that individuals with SCD have access to the high quality
of care and provides SCD education, training, and resources for clinicians.
Due to traumatic experience
living with a chronic illness like sickle cell disorder for over 5 decades, she
was inspired, to help people who face the challenges of living with sickle cell
disorder. Born in 1965 she started her
primary education at the University of Lagos Staff School.
Despite her over 100 hospital
admission and blood transfusions, several surgical operations and physical
limitations, she has inspired many through her story.
She is the author of two books –
an autobiography, Still Standing and a novel - The Misadventures of Oga and
Madam AS, she is an alumnus of Enterprise Development Centre, Pan Atlantic
University and a Vital Voices Fellow, a US-based social entrepreneurial
fellowship for women.
Toyin has been on various
television shows including Seriously speaking with Adesuwa Onyeuke, Channels TV
Book Club, Moments with Mo, TVC News as well as radio programmes and the print
media, telling her story and spreading the issues of Sickle Cell Anaemia
Disorder.
SAMI has remained the best sickle
cell foundation in Nigeria. It is run by the best hands with hands-on
experience and the team understands the core needs of the sickle cell
community.
Headquarters Office Address: 22B, Amosu Street, By UBA Bank, off Bode
Thomas Road, Surulere, Lagos State, Nigeria
Website:
www.sicklecelladvocacy.org
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