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Update on Jolly's First Trip of 2016 - Epilepsy Outreach

Jolly has returned from her first trip of 2016! She just spent three weeks in rural Uganda trying to accomplish a long list of things that need to be completed before her second trip at the end of September. Over the next few weeks we will share updates on our programs from the trip and what we expect to happen on the next trip in September.

Our epilepsy outreach clinic occurs on a monthly basis. It occurs one of the last days of each month and has been a key program for over a year now. Over a year ago, we discovered that epilepsy is an epidemic in the area that we are serving and that so many of our patients, and those that we hadn’t even seen yet, were suffering from the disease. We decided to start an outreach program that would specifically target, treat, and council the members of the community that were suffering from epilepsy.

Even though this project has been up and running for over a year, Jolly hadn’t been able to attend one. They were never aligned with the dates she was traveling in Uganda. During this most recent trip though, Jolly was able to attend her first epilepsy outreach clinic that saw 225 patients! Our first outreach clinic over a year ago, saw 156 patients. We believe that such an increase in numbers is a great accomplishment.

The epilepsy patients are so stigmatized that they often fear public settings and won’t leave home out of fear of the judgement from others and the uncertainty of when they are going to have a seizure. The fact that the number of patients seen each month continues to increase and that 90% of our patients are now completely seizure free makes us confident that this program is one of the most beneficial things GLO has done for the community.

Though the project is doing well, there are still some issues that we need to work out that are frustrating for the patients. There are two types of medications that we use to treat our patient’s epilepsy. Sometimes one medication will work for one patient and not for the other. If one doesn’t work, the other one usually does. We frequently will run out of epilepsy medication at our medical camps and at our monthly epilepsy outreach. This is frustrating for us and even more so for our patients.

Often times, due to the increase in the number of patients, some will go home from the outreach with no medication for the next month. Without their treatment, they begin having seizures again and can’t live their lives normally. Sadly, even the hospitals in the area will often run out of epilepsy medication or not be able to purchase any at all because the Ugandan government isn’t supplying it anywhere. In order to combat this, we are looking into purchasing those epilepsy medications here in the USA and having them sent to our clinic in Uganda, but that is still a difficult task that takes lots of time and needs lots of connections. Though it is difficult, we are trying our best to make it happen for the benefit of our patients.

Another issue that we come across often is that patients have a difficult time finding transportation to the epilepsy outreach. Our first time patients who have yet to receive treatment and have frequent seizures have a hard time walking the many miles they may have to go to reach the clinic for the outreach. On top of having the seizures, they are malnourished and are even weaker because of that, making traveling long distances on foot even harder. It is a vicious cycle, but luckily we have our Peer Epilepsy Ambassadors (PEA’s) to help.

They, like our VHT’s, will travel to patients houses and use their training and understanding of the disease to council patients. They will provide them information and counseling on dealing with their disease, how to properly keep themselves healthy and nourished, as well as provide them with medication, when it is available. Our PEA’s are a great asset to our epilepsy program. Because they all have epilepsy, but are doing well on treatment because of the program, they are able to relate to other patients and the patients are more willing to open up to them and seek the help that they need. Our PEA’s are trained by health professionals and are given everything they need to be liaisons for our program. They are able to make referrals to our clinic and do whatever they can to help other patients get treatment, counseling, and live regular lives.

Once our clinic is fully stocked with supplies and equipment, patients won’t always have to wait a month for treatment. Some are still too scared to come out when there is a large group, even if they all are suffering from the same illness. They may feel more comfortable coming to the clinic for treatment of their epilepsy rather than come to an outreach, and soon they will be able to do that. We are still raising money for the equipment and supplies for the clinic. If you would like to donate to help us get it fully operational within the next few months, click here to be directed to our clinic capital campaign page.

Thank you for all your support of our work. Stay tuned over the next few weeks for updates from Jolly’s most recent trip to Uganda about our other programs as well!

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