Lupus chick #9: Marie Therese Aouad

At a time when she was supposed to be giggling with her girlfriend’s over last night date, Marie Therese was struggling to remember exactly who her friends were. She had neurological lupus, a type of lupus that affected her brain leaving her with gaps in her memory and unable to recognise familiar faces. She could not work and would easily get lost and disorientated in a crowd. Luckily she had a close family that was able to support her and strangely enough, no matter who or what she forgot, she never forgot her mother.

After battling with lupus for seven years Marie-Therese died from complications of a prolonged seizure. The lupus and the medications had caused her blood pressure to rise, giving Marie severe headaches and eventually a seizure. Since Marie-Therese was young and strong, and had been through much worse, her doctors did not panic and rush when he was told about the seizure.  By the time he got there, it was too late, Marie-Therese was gone.

Her mother Rebecca, a teacher, set up a Foundation in her daughter’s memory to help people in Ghana with lupus. The Marie-Thereze Aouad Memorial Lupus Foundation (MTAMLF) uses media to raise the profile of this disease. Rebecca recognized that many people in her area with lupus had been misdiagnosed as having another disease. Many patients were getting treatment for kidney disease, but the lupus attacking the kidneys and causing all the problems was rarely identified. The MTAMLF offers a free laboratory testing service where patients can be tested for lupus antibodies for free. They also offer monitoring of inflammatory markers and other tests. In the two years of its existence Rebecca had set up two clinics in Ghana’s largest cities: Accra and Kumasi.

The drugs for lupus are available in Ghana but they are expensive. The Foundation already supports 50 people with lupus and hopes to support some more in the near future. They dream of setting up patient support groups and counselling services as well as funding more research into the true burden of lupus in Ghana and possible solutions.