Sharecare Ghana
Nana Yaa Agyeman

Sharecare Ghana now a registered charity
December 2007

After many months and tons of paperwork, the Ghana Support Network, Sharecare Ghana, has been registered as a non-governmental organisation.  Now that this legal requirement has been fulfilled, we are going to open an account and start raising funds for research. Rare neuro-immunologic diseases are very new to Ghana and it is only since 2003 that they started coming to the notice of the doctors.  But since then, significant numbers have been diagnosed. Sharecare Ghana includes Multiple Sclerosis and Lupus among these diseases, because they are just as new and rare here. We have also been approached by people with rheumatoid arthritis, but we have not formalised their membership yet, though they will be welcome when we start our meetings.

We have contacted a research institute in Accra, Ghana, (Noguchi Memorial Institute) about the possibility of researching neuro-immunologic conditions in Ghana and they assure us that they will take that up. One area of particular interest to us is nutrition or diet and its effect, if any, on these conditions. It is generally accepted that a particular diet can be used to improve the conditions of people with MS.  Would this diet benefit people with other auto-immune diseases?

The membership of Sharecare Ghana is gradually growing, but home visits are our only activity so far. One member has volunteered her home for a group meeting, because some of the members are reluctant to use public places. Hopefully, we should be able to meet as a group soon.

We have done letters to other NGOs, Parliament, the media and the relevant government offices to inform them of our registration and to give notice that we will be calling on them for assistance. We have also applied to the Ghana Federation for the Disabled for membership. At a meeting with them, it was revealed that they had no idea about auto-immune diseases and only focus on specific disabled groups, like the blind, the physically disabled, etc. They did not know about cross disabilities. They asked for a write-up on rare neuro-immunologic conditions, which we did, using the TMA website as the resource, among others. We are yet to receive their reply.

That’s it so far for the Ghana Support Network. We are scouring the TMA website for fund raising ideas to add to whatever we can come up with.  In addition to creating awareness and raising funds, Sharecare Ghana intends to:

• Get specialists to give educational talks to members and their families;
• Act as an advocacy group to put pressure on local and national health authorities to treat neuro-immunologic diseases with the seriousness deserved in the national health care delivery system;
• Advocate for subsidized long-term drug treatment.

The directors/members are: Doris Obodai-Sai, Naa Torshie Sai, Suzy Ofosu, Sylvia Amoako, Adadzewa Otoo and Nana Yaa Agyeman.  Mr. Egbert Faibille, a legal practitioner, is Secretary.  The Medical Advisors are Dr. Albert Akpalu, Physician Specialist/Neurologist at at the Korle Bu Teaching Hospital and Dr. Nii Bonney Andrews, Neurosurgeon at neuroGHANA (a private hospital).

Sharecare Ghana, the Ghana Support Network holds first meeting
March 2008

The first meeting of Sharecare Ghana was held on Saturday, March 22nd in Accra.  The meeting exceeded our expectations. Twenty-five people showed up, including people with rare neuro-immunologic conditions, their families and carers and two officials from the Noguchi Memorial Institute for Medical Research.

The conditions represented were: Neuromyelitis Optica (NMO), Polymyelitis, Multiple Sclerosis, Spondylitis, Rheumatoid Arthritis, Lupus and Hypothyroidism.  Members passed a resolution to make the support group open to all people with auto-immune diseases and to add on the functions of an association since the objectives include advocacy.  Members agreed to meet fortnightly.
 
A local newspaper captured the meeting in its columns, which we later syndicated to other local newspapers. We have their permission to reproduce the articles.

Auto-immune Diseases in Ghana; Noguchi Memorial Institute to Begin Research; Sharecare Ghana Holds Inaugural Meeting
The Accra Daily Mail, Tuesday March 25, 2008

The Noguchi Memorial Institute for Medical Research (NMIMR) is to begin a study into auto-immune diseases in Ghana.  This was disclosed by officials of the institute at the weekend to members of Sharecare Ghana, a support group and association of people with auto-immune diseases and their families in Ghana.

The study being spearheaded by Dr. Margaret Armar-Klemesu, a nutrition expert, head of the Department of Nutrition at NMIMR and Dr. Michael Ofori, an immunologist is as a result of earlier discussions between members of the association and NMIMR on the seeming rise of auto-immune conditions in the country.

Officials of Noguchi agreed that a study needs to be done to establish the numbers as the basis for fuller research into the prevention and possible control of auto-immune diseases.
At the meeting, the Noguchi officials outlined the various diseases classified as auto-immune and the fact that they affect more women than men, but are more dangerous when they do affect men.

Members of the association welcomed the idea of research and said this initiative is long overdue. They said auto-immune diseases should be covered under the National Health Insurance Scheme since they all pay the NHIS tax directly or indirectly.

Founded in 1979, the Noguchi Memorial Institute for Medical Research is considered to be “the leading biomedical research institute in Ghana”.  Sharecare Ghana is the initiative of Nana Yaa Agyeman, herself diagnosed with Devic’s Disease, a close relation of Multiple Sclerosis (MS), and has since attracted many members with similar or related conditions.
Auto-immune diseases and diseases of the central nervous system 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.

Auto-immune diseases include the following: Rheumatoid Arthritis, Acute Disseminated Encephalomyelitis (ADEM), Multiple Sclerosis (MS), Transverse Myelitis, Neuromyelitis Optica (Devic’s Disease), Lupus and others. Ghana’s healthcare delivery system is more geared towards the treatment of diseases like malaria, HIV/AIDS, the five killer diseases in children with very little attention being paid to other equally debilitating ailments.  There is practically only one practicing neurologist in the country, whose work load gets heavier by the day as a result of the rising numbers of people being diagnosed with auto-immune diseases.

A Good Initiative Worth Supporting
The Accra Daily Mail Opinion, Tuesday, March 25, 2008

The story about Noguchi Memorial Medical Institute agreeing to start research into auto-immune diseases in Ghana is welcome indeed.  This is one area where research, diagnosis, treatment and professional care are almost ignored by the country’s healthcare delivery system, but from all indications, which is as debilitating as any of the more popular ailments that attract all the attention and funding.

Though a Disability Act has been passed by the government, very few people know that many disabilities are as a result of auto-immune diseases.  If disability is so important as to have an Act of Parliament passed to support people with disabilities, is it not equally important for the country’s healthcare delivery system to turn its attention to the causes of some of those disabilities?

That is why we are very happy with the initiative Noguchi has taken to research into the seeming rise in auto-immune diseases in Ghana. Funding of course would be the main problem.  We therefore wish to call on health authorities and establishments, philanthropists, corporate Ghana and the international donor agencies to support Noguchi’s noble initiative.  It may be a small area of research but could yield huge amounts of data that would eventually support the treatment and elimination of the better known ailments like malaria and HIV/AIDS.

Nana Yaa Agyeman
P.O. Box CT4910
Cantonments
Accra
Ghana
Tel: 233-21 220084
Cell: 233-20 815 7404
Email: sharecare4u@gmail.com
Website: www.sharecare4u.com