Sharecare Ghana

Brief history
Sharecare Ghana (Sharecare4u) was started in 2006 by a group of people in Ghana with rare neuro-immunological diseases. The group was later widened to include all people with autoimmune conditions - such as Transverse Myelitis, Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica (Devic's disease), Rheumatoid Arthritis, Multiple Sclerosis, Lupus - their families and friends, and the professionals taking care of them.

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. For yet unknown reasons, 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 and 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.

Ghana
According to the Ministry of Health, since 2003 when these disorders started being recognized and investigated in Ghana, significant numbers have been diagnosed.

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

• Share our feelings and experiences;
• Learn more about our conditions through getting specialists to give us educational talks;
• Talk through problems we are facing or choices we have to make;
• Help each other through sharing ideas and information and providing support;

• Create awareness among the public about these diseases;
• Act as an advocacy group to put pressure on local and national health authorities to treat autoimmune diseases with the seriousness deserved in the national health care delivery system (autoimmune conditions are not covered under the NHIS in Ghana);
• Advocate for subsidized long-term drug treatment;
• Advocate for 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.

Sharecare Ghana was registered with the Registrar General’s Department on 19th November 2007 as a non-profit organisation and launched on June 19th, 2008.

Achievements

• Members of Sharecare Ghana have been holding monthly meetings through which some members have been able to seek medical and other professional opinions.
• The Noguchi Memorial Institute for Medical Research is collaborating with Sharecare Ghana in a study of autoimmune conditions in Ghana. The first stage is to estimate the number of persons affected by autoimmune diseases in Ghana and to establish the type of autoimmune disease that is most prevalent. The first phase will require an estimated amount of GhC160,000 ($151,700) for a period of one year.
• The Sharecare4u Endowment Fund for Research, Advocacy and Management was launched on June 19th. One of the initial purposes of the fund is to raise enough funds for the above research.
• Sharecare Ghana is the Ghana Support Network of the Transverse Myelitis Association based in the US. Sharecare is also partnering with ABANTU for Development, a women’s development organization in some projects.

Future plans

• To lobby for the National Health Insurance Scheme to cover persons with autoimmune conditions.
• To advocate for a professional home care system for persons who are totally dependent owing to ill health, and take that burden off their families.
• To set up a well equipped resource centre for people to be better informed about autoimmune conditions. This will also create employment possibilities for members and the community.
• To establish a rehabilitation centre that will have professional carers, physiotherapists and counsellors for persons who are semi or totally dependent on others for their day to day living activities.
• To set up a scholarship for a neurology student (or a related discipline).

Organisational structure
Directors and Board:
Member-directors: Doris Ahiney Obodai-Sai, Naa Torshie Sai, Suzy Ofosu, Sylvia Amoako, Adadzewa Otoo and Nana Yaa Agyeman.
Chief Patron: Prof. P.K. Nyame, Rector, Ghana College of Physicians and Surgeons.
Advisors/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 Accra Daily Mail. Company Secretary: Egbert Faibille, legal practitioner.

Management:
Chairperson: Doris Ahiney Obodai-Sai
Coordinator: Nana Yaa Agyeman
Secretary/treasurer: Nana K. Agyeman

---

Presentations from the Sharecare Ghana launch (Powerpoint files):

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