At age 36, Alyce (not her real name) had it all. Life had so far been good. With a fulfilling career and a happy marriage which was blessed with two beautiful daughters, Alyce could not ask for more. Then one day she began vomiting. Everything she took in - even water came out. She went from one clinic to the other where she was detained, put on intravenous infusions and discharged, but the symptoms did not change. Thus began so many years of battle with a disease that seemed strange at first, but was finally diagnosed as Neuromyelitis Optica (Devic's disease), one of a number of rare neuro-immunological conditions. Other neuro-immunological conditions are Transverse Myelitis, Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, Multiple Sclerosis and Lupus. These conditions are also classified as auto-immune diseases or diseases of the central nervous system. The spinal cord, the brain, the optic nerves and other organs could be affected, and persons with these disorders may suffer partial or total disability. There is no cure yet for these conditions, but the symptoms are largely manageable with drugs. For yet unknown reasons, about 75 per cent of auto-immune diseases occur in women, most frequently during the child bearing years. Hormones were thought to play a role, because some auto-immune illness occurred more frequently after menopause. Others suddenly improved during pregnancy. Auto-immune diseases also seemed to have a genetic component, but, mysteriously, they could cluster in families as different illnesses. According to the Ministry of Health (MOH), since 2003 when these disorders started being recognised and investigated in Ghana, significant numbers have been diagnosed. To minimise the discomfort and the isolation that those who suffer from this long-term illness go through, a support group called Sharecare Ghana (Sharecare4u) has been formed for people in Ghana with rare neuro-immunological conditions. The objectives of Sharecare Ghana are, therefore, to create awareness of these diseases, which hitherto were unheard of, or diagnosed in these parts and also facilitate visits and meetings of people with these conditions and their families. The group already hosts a website for people with long-term illnesses to share their experiences and treatment options. It further aims at getting specialists to give educational talks to members and their families, act as an advocacy group to put pressure on local and national health authority to treat neuro-immunological diseases with the deserved seriousness in the national health care delivery system. It is heart-warming that Sharecare Ghana also intends to advocate for subsidised long-term drug treatment and research into these conditions. This would be boosted with advocacy for proper implementation of the Disability Law of Ghana and networking with similar support groups locally and world-wide. For Sharecare Ghana, understanding the disease is key for both the effective treatment of the sufferer and for helping relations and community members to deal with it. Educational information made available by the organisation indicates that Devic's disease is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin sheath (fatty, protective covering of nerves) that almost exclusively affect the optic nerves and spinal cord. It usually causes temporary blindness, occasionally permanent, in one or both eyes. It can also lead to varying degrees of weaknesses and paralysis in the legs or arms, loss of sensation, and/or bladder and bowel dysfunction from spinal cord damage. The major risk to patients is severe damage to the upper spinal cord, which can lead to inability to breathe on one's own. This may be fatal. However, some patients with Devic's disease seem to enter a long period of time where the disease remains stable. Devic's disease has not been studied in large enough populations to predict the outcome of individual cases with great certainty. The organisation said Transverse Myelitis is also a neurological syndrome caused by inflammation of the spinal cord. It occurs in both adults and children. Almost all patients will develop leg weaknesses of varying degrees of severity. The arms are involved in a minority of cases and this is dependent upon the level of spinal cord involvement. Sensation is diminished below the level of spinal cord in the majority of patients. Recovery may be absent, partial or complete and generally begins with one to three months. Significant recovery is likely, if no improvement occurs within three months. Similarly, Acute Disseminated Encephalomyelitis (ADEM) is a neurological disorder characterised by inflammation of the brain and spinal cord caused by damage to the myelin sheath. ADEM may occur in association with a viral or bacterial infection, as a complication of inoculation or vaccination, or without a preceding cause. Onset of the disorder is sudden. Symptoms, which vary among individuals, may include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include paralysis of a single limb or on one side of the body. The disorder occurs in children more often than in adults. Optic Neuritis is also an inflammatory condition involving the optic nerve, which presents various abnormalities of vision. The patient may notice blurred or distorted vision, reduced colour vision, or a blind spot. Frequently, there is also a history of pain with eye movement, and this may precede the visual loss. The condition usually occurs in adults under 45 years of age, and women are affected much more frequently than men. Another condition that affects the central nervous system is known as Multiple Sclerosis (MS). It is most often diagnosed in people between the ages of 20 and 40, and women are almost twice more likely to develop it than men. There is no cure for MS, but treatments and specialists can help to manage symptoms well. Lupus can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. For most people, lupus is a mild disease affecting only a few organs but for others, it may cause serious and even life-threatening problems. Source: Rosemary Ardayfio/Daily Graphic