Sharecare Ghana

Sharecare Ghana (Sharecare4u) is an association of people in Ghana with autoimmune and neurological diseases, their families, care-givers and friends.
The association was founded in 2006 and launched in 2008. It is registered with the Registrar General’s Department and the Department of Social Welfare as a non-profit organization.

Vision
A society that factors in every person’s condition of health and/or disability, and guarantees their human rights.

Mission
To create awareness of, advocate for and support people with autoimmune and neurological diseases, and promote research into these diseases.

What are autoimmune diseases?
Autoimmune diseases arise from an overactive immune response of the body against substances and tissues normally present in the body. In other words, the body attacks its own cells.

There are about 80 human diseases classified as either definite or probable autoimmune conditions and almost all of them appear without warning or apparent cause. About 75 percent of autoimmune diseases occur in women, most frequently during the childbearing years.

Autoimmune diseases often don’t show a clear pattern of symptoms and are therefore difficult to diagnose. The symptoms may include some or all of the following: numbness, vomiting, loss of body co-ordination, muscular spasms, vision impairment or loss, fatigue, tingling sensation, weight changes, depression, constipation, diarrhea and others. Various body organs can be affected like the spinal cord, the brain, the optic nerves, the kidneys, the skin etc. and persons with these disorders may suffer partial or total disability.

There is as yet no cure for autoimmune diseases, but the symptoms are largely manageable with drugs.

Aims and objectives
The aims and objectives of Sharecare Ghana are to:

• Form support groups for sufferers and their care-givers to

1) Share our feelings and experiences,
2) Learn more about our conditions through getting specialists to give us educational talks,
3) Help each other through sharing ideas and information and providing support;

• Create awareness among the public about these diseases and the disabilities they cause;

• Act as an advocacy group to pressurize local and national health authorities to treat autoimmune and neurological diseases with the seriousness deserved in the national health care delivery system;

• Advocate for patient-centred, integrated health care;

• Advocate for subsidized long-term drug treatment;

• Initiate research into these conditions and raise funds for research;

• Advocate for proper implementation of the Disability Act of Ghana in conjunction with the Ghana Federation of the Disabled;

• Network with similar associations locally and worldwide;

• Host a website for people with long-term illnesses to share their experiences and treatment options.

Current Status

• Members of Sharecare Ghana have been holding monthly meetings through which some members have been able to seek medical and other professional opinions.

• The Sharecare4u Endowment Fund for Research, Advocacy and Management was launched on June 19th, 2008 to raise funds for research.

• Sharecare Ghana is a member of the Ghana Federation of the Disabled and the Coalition of NGOs in Health in Ghana. Sharecare also partners with ABANTU for Development, a women’s development organization in some projects. Sharecare Ghana is a member of the International Alliance of Patients’ Organizations, based in the UK, and is the Ghana Support Network of the Transverse Myelitis Association based in the US.

Plans

• To continue lobbying for the National Health Insurance Scheme to cover all autoimmune and neurological diseases.

• To get medical doctors to recognize early signs of autoimmune and neurological conditions and refer their patients to specialists.

• To advocate for a professional state-financed home care system for persons with severe disabilities.

• To give an award to caregiver of the year.

• To advocate with other disability organizations on issues of accessibility.

• To set up a resource centre for people to be better informed about autoimmune and neurological conditions.

• To establish a rehabilitation centre with professional carers – doctors, physiotherapists and counsellors, for people who are partially or totally dependent on others for their activities of daily living.

• To set up a scholarship for a neurology student (or a related discipline).

Organizational structure
Member-directors:
Doris Ahiney Obodai-Sai (Chairperson), Phyllis Christian, Lara Cookey, Anne Sekyi, Adwoa Sey, Nana Yaa Agyeman
Company Secretary: Joseph Gadagbui

Management:
Coordinator (Director): Nana Yaa Agyeman
Deputy Director: Thiawa Opon
Treasurer: Dorothy Ofei
Director of Operations: Farida Bedwei
Public Relations Officer: Lily Osafo-Kissi
Secretary: Agnes Fobi
Assistant Secretary: Samuel Quarcoo

Advisors and patrons:
Dr. Albert Akpalu - Physician Specialist/Neurologist, Korle Bu Teaching Hospital
Dr. Nii Adjetey Bonney Andrews – Neurosurgeon, neuroGHANA
Alhaji Abdul-Rahman Harruna Attah – Managing Editor, The Mail.

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Become a member by filling out a membership form:
PDF version
Word document

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Presentations from the Sharecare Ghana launch (Powerpoint files):

-Autoimmune Diseases by Dr. Ida Kuwornoo
-Autoimmunity by Dr. Michael Ofori