"Toyin Adesola plans big for people living with Sickle Cell, as 13 Global thought leaders set to participate in charity auction for the XTRA CARE CLINIC"

 

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