A song of hope dubbed ‘At the mention of your name’ has been released to commemorate the 17th global observance of World Lupus Day in Accra.
“The song is dedicated to all lupus warriors around the world. It is also dedicated to all those battling with autoimmune diseases, Covid-19 infections and different kinds of sicknesses,” said Emma Wilhelmina Halm Danso, Executive Director of Oyemam Autoimmune Foundation (OYEMAM).
Lupus is a chronic autoimmune disease that affect at least 5 million people worldwide.
Out of these, about 90% are women and most fall within the childbearing age of 14 – 44years.
According to Mrs Danso, this year’s World Lupus Day is unique because it coincides with Mother’s Day.
She said it is also significant that the World Health organisation declared 2020 as ‘The year of the midwife and nurse’.
Speaking on lupus and autoimmunity in Ghana, she said it is important to know where we stand as a nation when it comes to the subject and set a course to address our concerns and peculiar needs.
Being a patient herself she stated that autoimmune patients in Ghana need an assurance that they are not being neglected in national policy.
“Patients are equal stakeholders in Ghana’s healthcare system and as such must have a voice in all policies and regulations that impact their lives”, Mrs Danso stated.
“It is therefore important to have a dialogue with our policymakers and regulators to ensure that our voices are heard as lupus and autoimmune patients.”
The Director of the non-profit Foundation stressed that lupus must be attacked from all angles; and that includes improvement in the healthcare delivery, medical research, political commitment as well as changes in cultural norms and beliefs which are not particularly helpful.
“We are requesting for lupus studies in key hospitals, improved diagnosis and the establishment of lupus clinics in our major hospitals,” said Emma Danso.
Lupus is a chronic autoimmune disease. In other words, it is a condition that occurs when a person’s own immune system fights them and causes inflammation in different parts of the body over a long period of time.
It is characterized by good days where one experiences little or no symptoms and bad days of symptoms called flares.
Mrs. Danso explained that flares are connected to different triggers such as infections, stress, sunlight, toxins, chemicals among others.
“Lupus patients should be on a constant look out for what triggers their symptoms in order to manage them effectively,” she added.
The disease affects different patients in different ways and that makes its diagnosis very difficult. It can take many years to get an accurate diagnosis.
Some of the symptoms patients experience include chronic tiredness, headaches, blood clots, organ damage, fever, skin rashes, hair loss, weight loss, memory loss, mood swings, painful and/or swollen joints.
Lupus patients are primarily treated by rheumatologists but also they are also cared for by other specialists depending on their symptoms. For example, a lupus patient might be seeing a nephrologist for kidney symptoms, dermatologist for skin and a clinical psychologist or psychiatrist for mental and emotional symptoms.
Currently, there are only two rheumatologists in Ghana. And the only rheumatology clinic in the nation is at the Korle Bu Teaching Hospital in Accra.
The Executive Director of Oyemam Autoimmune Foundation stressed that this is inadequate for Ghana’s population of about 30 million people.
She said patients travel from different regions of Ghana to Accra to attend the clinic.
She cited that with the hope of seeing a rheumatologist, patients go through a lot of stress which includes travelling expenses and hazards, accommodation, costs of laboratory tests and medications.
Yet for some, they often return disappointed because they are attended to by other physicians who are assisting due to the shortage of rheumatologists.
Mrs Danso, therefore, called on government to sponsor more medical students to specialize in rheumatology to bridge the gap in that speciality.
She also advocated for the establishment of lupus clinics in all the teaching hospitals in Ghana.
She pointed out, “This will ultimately save lives by enabling quicker access to healthcare. It will also reduce pressure on physicians, patients and the healthcare facilities.”
She mentioned that the hope of OYEMAM was that the voice of lupus and all autoimmune patients in Ghana would be heard.