Autoimmune disorder must be on national agenda

Accra, April 26, GNA - The 'Oyemam Autoimmune' Foundation was on, Tuesday, launched, in Accra, to galvanise support for persons suffering from lupus, an auto immune disorder , to enable them to access affordable health care and live productive lives.

Madam Esther Cobbah, the Chief Executive Officer (CEO) of Stratcomm Africa, who launched Oyemam, therefore, urged policy makers, the Legislature, Corporate Ghana, health professionals, pharmaceutical companies the media, and other stakeholders, to put Lupus high on their agenda and offer material and financial resources towards the cause.

She said the CEO of Oyeman, Mrs Emma Parker Danso, who had been suffering from lupus for about eight years, was utilising the opportunity in her adversity to make life better for others who had been afflicted, and thus must be supported .

Information on the Healthlife website explains that an autoimmune disease develops when a person's immune system, which defends his/her body against disease, decides that the healthy cells are foreign. Consequently, the immune system attacks healthy cells.

Depending on the type, it says, the disease can affect one or many different types of body tissue, while it can cause abnormal organ growth and changes in organ function.

There are as many as 80 types of autoimmune diseases, with many having similar symptoms.

They include, Rheumatoid arthritis, which is an inflammation of the joints and surrounding tissues; systemic lupus erythematosus, which affects the skin, joints, kidneys, brain, and other organs; celiac sprue disease - a reaction to gluten (found in wheat, rye, and barley) that causes damage to the lining of the small intestine; and pernicious anaemia- a decrease in red blood cells caused by inability to absorb vitamin B-12.

Others are vitiligo - white patches on the skin caused by loss of pigment; scleroderma - a connective tissue disease that causes changes in skin, blood vessels, muscles, and internal organs; psoriasis - a skin condition that causes redness and irritation as well as thick, flaky, silver-white patches; as well as inflammatory and bowel diseases - a group of inflammatory diseases of the colon and small intestine.

Madam Cobbah, said she had observed Mrs Parker Danso since she was engaged by Stratcomm in 2010, enduring series of health crises, which sometimes indicated little hope of her survival.

'Emma did her internship at Stratcomm in 2009 and distinguished herself as an intelligent, multitalented, enthusiastic and impactful young lady, so when Stratcomm decided to employ people the next year, I sent a search party to look for her.

'When they located her, she sent a message that she was undergoing treatment… and when she reported, Emma had really changed physically; and then we got to know that it was lupus.

'There have been times when Emma will report to work in the morning in an apparent healthy condition, but in about two hours, she would be unable to speak or even type'.

Madam Cobbah, who later launched an appeal for fund to support Oyemam's cause, therefore, lauded Emma for her resilience and selflessness; and her husband, Kwasi Danso, for giving a practical meaning to his marriage vow, 'For Better for Worse'.

Explaining her mission, Mrs Parker Danso said she was diagnosed when she had just graduated from university with a passion to do many great things, but the debilitating nature of the disease compelled her to give up her big dreams.

She said the treatment for her condition cost about GHC6,000 a month, therefore, without the committed support from all the spheres of society, the victims of lupus would not survive.

They were often misunderstood and labelled as 'lazy' or 'dull', or stigmatised because sometimes the symptoms do not manifest physically, she said.

In 2011, therefore, she said conceived the Oyemam vision to use advocacy, awareness creation, counseling and fundraising in line with the values of integrity, compassion, hope and resilience to help the many suffering in silence to receive help.

Oyemam, therefore, has partnered the Greater Accra Regional Health Service, the Noguchi Memorial Institute for Medical Research Institute and some individuals such as Dr Audrey Gadzekpo, the Dean of the School of Information and Communication, Legon, to prosecute her agenda.

Dr Linda Vanotoo, the Regional Health Service Director, pledged her commitment to champion the cause of the cause of Oyemam with local and international partners in health.

She said, though autoimmune cases were rising, the disorder was not receiving the requisite attention because it was not among the 10 most commonly reported cases at health institutions.

She said the nature of the disease also made its diagnosis very difficult, therefore, it was possible for doctors to miss it.

She urged pharmaceutical companies to consider developing affordable drugs for victims of the condition.

In acute cases, treatment per person could cost GH¢2,000, she said, while most of the drugs were not covered under the National Health Insurance Scheme.

Dr Sally-Ann Ohene of the World Health Organisation Country Office, urged the media to create sustained awareness of the condition so that victims would seek early diagnosis and treatment, which was critical for survival.

Dr Dzifa Dey, the Rheumatologist at the Korle Bu Teaching Hospital, in a speech read on her behalf, said a two- year audit of in-patient admissions at the Medical Unit of the Korle Bu Teaching Hospital indicates that rheumatologic cases comprised 5.8 per cent of all medical admissions.

She said most deaths were from infections and renal complications, while the mortality rate was 48 per cent.

She attributed the situation to the delay in diagnosis, which she said could be 11 years after the first symptom.

Dr Dey said because of the lack of specialists, the cases were mainly managed by general practitioners, who lacked adequate knowledge about the condition.

Dr Gadzekpo, for her part, called for immediate action from all stakeholders in the form of policy, education, financial resources, emotional support and prayers.

The disease can affect anyone at any age but, according to the American Autoimmune-Related Diseases Association, (AARDA) autoimmune diseases often run in families, and 75 per cent of those affected are women.

African Americans, Hispanics, and Native Americans also have an increased risk of developing an autoimmune disease, the AARDA says.

Diagnosing an autoimmune disease involves identifying the antibodies the body is producing.

Autoimmune diseases are chronic conditions with no cure. Treatment, therefore, involves attempts to control the process of the disease and to decrease the symptoms, especially during flare-ups.

Victims are advised to eat a balanced and healthy diet, exercise regularly, get plenty of rest, and take vitamin supplements, among other measures.

Medical interventions include hormone replacement therapy, if necessary, blood transfusions, if blood is affected, anti-inflammatory medication, if joints are affected, pain medication and immunosuppressive medication, and physical therapy.

GNA