May is mental health awareness month and here at Guiding Light Orphans, we are trying to bring awareness to the large number of patients we are serving in Uganda that are afflicted with epilepsy. May also marks the one-year anniversary of our epilepsy program which provides monthly outreach programs strictly for children and adults with epilepsy. Because of the stigma that goes along with mental illnesses, especially with epilepsy in Uganda, it is important that the patients who are afraid to seek treatment for their illness, because of the judgement from others who don’t understand, feel comfortable enough to come to the outreach and receive the medication and counseling that they need.
There is limited information on mental health and epilepsy within Uganda. The patients infrequently seek out care because of the stigma around mental illness and the cost of treatment and medication. Close to 20% of Ugandan’s suffer from mental illness and 5% of children suffer specifically from epilepsy. It is also estimated that 65% of patients with mental illnesses do not receive treatment. Being able to witness first-hand the effects that mental illness has on patients and how the lack of resources brings patients very far distances to access our programs has made the GLO team realize just how important this work is in this area.
Meet 24 year-old Augusto, one of GLO’s greatest success stories within the epilepsy program. We first met Augusto and his mother Ventrina in 2014 at our first medical camp. Augusto was in a wheelchair, disabled and unable to neither walk nor communicate. At the time, he suffered from tuberculosis, fevers, and other health issues. He was weak and looked frail because he lacked the nutrition that he needed. We were told he suffers from epilepsy and sometimes when his seizures were aggressive, he would fall out of his wheelchair. We later learned that Uganda, and Masindi in particular, has the highest rate of epilepsy, that it is an epidemic, and that the cause is unknown.
Thanks to our partnership with Masindi Hospital, a program to educate, treat, and counsel patients and their families who are effected by the epilepsy epidemic, was started in May of 2015. Augusto and Ventrina were some of our first beneficiaries of the program. Because of our program, Augusto was prescribed medication to treat his seizures and his mother was counseled on how to properly care for him and help him get better. Ventrina has kept up with his care and when we saw him at the medical camp in November 2015, he shocked everyone by getting up out of his wheelchair and walking around with no help. It was amazing to see how much of a change he had made in less than a year because of our epilepsy program. If his mother had never sought out help for him, his condition would have only got worse, but thanks to our dedicated medical staff, our Village Health Team (VHT’s) and their Peer Epilepsy Ambassadors (PEA’s), he now can only continue to improve.
There are many more stories of success like Augusto. We see nearly 200 patients on a monthly basis for counseling and treatment and many of them suffer in the same ways, but 90% of our patients that come regularly for treatment are now completely seizure free. That is a major accomplishment over the last year and we are happy to celebrate that as well as spread awareness of all mental illnesses, including epilepsy, this May.
To learn more about our epilepsy program, click here.