Sharecare4u Ghana
The Ghana Support Group for Rare Neuroimmunologic Diseases

I started thinking about a support group for people in a similar condition to mine one year after I fell ill.  It’s taken ten years, however, to see the beginnings of this dream, because of relapses and general weakness.

My name is Nana Yaa Agyeman and I’m from Ghana in West Africa. I am a 46 year old woman and was diagnosed with acute demyelination of the cervical cord in 1996, which was at various stages thought to be Guillain Barre Syndrome, Neuro-schistosomiasis, Multiple Sclerosis and Devic's Disease (Neuromyelitis Optica).

Over the ten year period, I have gone through symptoms of paralysis with ventilator support; I have been in a wheelchair; I have had relapses and partial blindness; and I have made a recovery of sorts. I’m now able to walk unaided indoors and with an aid outdoors.  My eyesight has improved.  My eyes still cloud over in hot weather, which means every afternoon since Ghana is in the tropics.  My full story can be found at the sharecare4u website, which is a platform for all people with long-term illnesses to share their experiences and treatment options.

We only got an MRI scanner in Ghana last year, and after having the scan, the impression was Multiple Sclerosis, but my neurologist said it could be Devic’s Disease.  The diagnostic test to confirm this is not available in Ghana.  From 2003 (when the only practicing neurologist returned to Ghana from specializing), 1,800 people have been diagnosed with MS and other demyelinating diseases.  I discussed this and the absence of the test for NMO with a web pal and have her permission to quote her reply to me:

I was thinking about the MS statistics.  For example, it is more common in women then in men; it usually occurs in the 20-40 age group; it is more common in the white race than in the black race, and rare in the Asian race.  It is more common in thin framed people.  It is less common in tropical areas, and more common in cold climate areas.  I have also heard of people being diagnosed in their 50’s who have never had symptoms before.  With Devic’s I hear that it is more common in Asians and in the tropical areas. After going over all of this in my head (must be the scientist in me), I can see why research is needed on this.  Many MS patients may really have Devic’s.  The test needs to be offered everywhere so that all MS patients can be tested to rule out Devic’s.

Sharecare4u Ghana, the Ghana support group of The Transverse Myelitis Association, which is still in the formative stages, aims to create awareness about the existence of these neuroimmunologic disorders. They have only recently been found in this country giving rise to speculation about the causes, such as imported foods and additives, pesticides, chemicals in the water and environmental factors.  The support group will advocate for research into these diseases and raise funds for this research.

We will also act as an advocacy group to put pressure on local and national health authorities to treat neuroimmunologic diseases with the seriousness deserved in the national health care delivery system.

One of our major aims is to join other disability groups to push for the implementation of the Disability Act of Ghana. The Act was passed in August last year, but we are yet to see any changes.  It establishes a National Council on Persons with Disability, to coordinate groups such as ours. This has not yet been set up.  The Act gives owners of public buildings ten years within which to make their buildings accessible to disabled people. The time frame given them could certainly be debated.

The immediate task is getting people to join the group.  The neurologist who is the patron of the support group has been linking me with other patients with rare neuroimmunologic diseases that are interested in a support group.  I have been paying home visits to them to share the various stages we have gone through and why we should get this group going. We are also preparing flyers so that others can contact us.

The Ghana support group would appreciate tips from established support groups.  You can be sure that I will constantly learn from other groups, especially with regard to fund-raising.   Please feel free to get in touch with me. 

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