The Executive Director of Oyemam Autoimmune Foundation, Mrs. Emma Wilhelmina Halm Danso has called on society to support people afflicted with the autoimmune disease known as lupus.
Lupus has been a mystery and a silent killer in our society for a long time. OYEMAM believes that the time to give it the needed attention is now,” she stated.
She said lupus is an inflammatory autoimmune disease that manifests in so many different ways that it could be very difficult for family, friends and society in general to really understand what their loved ones with lupus go through. Education is therefore key to bring a change in the status quo.
Lupus symptoms range from mild to life-threatening and may change over time. Some of the symptoms include chronic and extreme fatigue, organ damage, hair loss, blood clotting, inflammation of joints and muscles, anaemia, fever, general malaise, chest pains, headaches, confusion, memory loss, depression, dry eyes, shortness of breath, gastrointestinal problems, and thyroid problems among others.
Some medications for lupus treatment include corticosteroids e.g. prednisolone; anti-malarial drugs e.g. hydroxychloroquine; anti-inflammatory drugs e.g. aspirin; non-steroidal anti-inflammatory drugs (NSAIDs) e.g. ibuprofen; immunosuppressive drugs e.g. methotrexate; anticoagulants e.g. warfarin; and monoclonal antibodies e.g. belimumab. Some patients may require chemotherapy or organ transplant.
She elaborated further that the standard therapies for treating lupus are generally aimed at helping patients feel better, inducing and maintaining a remission and preventing organ damage. These, she said are very expensive and tend to be extremely burdensome on the patient and loved ones because of the chronic nature of the condition. This has unfortunately led to some patients being abandoned and left to their fate.
According to her apart from the standard medications and other complimentary therapies, support and love from people and society are very vital in inspiring hope in persons suffering from lupus.
Mrs. Danso also explained that about 90 percent of lupus sufferers are women and, needless to say, it is these same women who are needed and expected to support families that constitute our society. Yet there is very little known about this debilitating health condition that afflicts our mothers, wives, sisters, daughters, friends, employees etc in Ghana.
World over, Mothers’ Day is celebrated during month of May. Incidentally, May also happens to be Lupus Awareness Month. According to the Lupus Foundation of America, lupus is one of the world’s cruellest, most unpredictable and devastating diseases that has brutal impact from those that suffer from it. The Executive Director of the OYEMAM noted that just like in other parts of the world, the prevalence of lupus is alarmingly on the increase and there it is very crucial therefore that all aspects of the Ghanaian society also show commitment to help fight lupus.
She said the Foundation remains committed to inspiring hope through advocacy, education, awareness creation, counselling as well as fundraising to provide medical assistance among others for people with autoimmune disorders particularly lupus.
Having suffered from various life-threatening flares from the condition for many years, Mrs. Danso together with her husband Mr. Kwasi Addae Danso have set out on a mission to be part of the solution to others (especially young people) going through similar challenges.
“Oyemam Autoimmune Foundation will continue to advocate for a National Autoimmune Commission to address the issues of autoimmunity in Ghana, Mrs. Danso stressed.
Mrs. Danso said that in 2015, the Foundation through the benevolence of some individuals, donated medicine to a teenage lupus patient who was reacting to medication that was given her while on hospital admission. Though she recovered for some time, she still passed away from a flare-up after some months because of inadequate support. She again encountered another teenage girl who passed away around the same time and was deeply saddened that lives which could have been saved were being so easily lost because their cries for help were not heard.
We are calling on policy makers, the Ministry of Health, Ministry of Gender, Children & Social Protection, corporate organizations, religious organizations, the media, civil society groups and the general public to join in the effort to inspire hope and bring relief to the many Ghanaians that are suffering in silence.
Mr. Danso on his part thanked those who have and continue to do help the Foundation in its work. He encouraged more supporters and donors to get on board.