On August 7, 2019, we embarked on our second mission to Liberia, West Africa. This was preceded by months of permission radio broadcasts and tedious site arrangements graciously done by Dr. Sodey Lake, RN, PhD, our national medical mission coordinator and her assistant Tomah J, Tilo, a journalist working with Radio Advent, Sinkor, Monrovia. Together as a part of an advance team, were able to meet with community zonal heads, health practitioners , radio announcers and doctors in Liberia. They carried out a full scale announcement campaign (radio and in person) over a period of nearly ten months. Dr Lake was able to liase with the Liberian Medical Dental Association (LMDA)President, Dr. Emmanuel Ekyniabah to secure the medical licensure forms that my team needed in order to apply for permission to conduct the medical mission. These forms were filled in before hand and submitted. ( I then had to meeting the full licensure board on August 10 for formal interview and then after that I paid the required $400 USD for the interview ($150), temporary license ($150) and LMDA fee($100).
My wife, Janet Zumo (former nurse now realtor), my daughter, Malaika Zumo (16 years old, aspiring medical science student) and I departed from Baltimore Maryland by Amtrak train for the overnight nonstop flight from New York JFK Airport to Abidjan, Cote D’Ivoire by Ethiopian Airlines. The 9 hours flight went smooth and we landed in Abidjan near schedule due to a delay at JFK Airport.
The focus of this trip was Epilepsy this year based on our observation from our visit last year and from the seminal work by Carlton Gadjusek et al in 1983 that there is an epilepsy belt in Liberia. We purchased and took along with us antileptics, antibiotics , antihypertensives and other medical supplies of approximately $25000 to $30,000 (retail market value). The preplanned obtaining of a wearable EEG device technology was at the last minute not possible due to US FDA regulatory issues.(We thank Dr Szabo and Dr Parvizi for all their last ditch effort in this process).
With the assist of our colleagues in Abidjan we cleared customs and spent a night in Abidjan with them.
In Abidjan, we discussed the medical mission and outreach logistics from an African perspective with pointers on the challenge ladder given the poor health sector and infrastructure challenges in Liberia. The next day, we made the 1 ½ hours flight to Liberia by Air Ivoire smoothly.
At the Liberia airport customs, with the permission letter received from the Chief Medical Officer and Deputy Minister of Health of the Republic of Liberia (previously secured by Dr. Sodey Lake, our national mission coordinator) we cleared Liberian custom without incident.
We made the 1 ½ hour trip to Monrovia from the Robertsfield International Airport successfully. The next day we met with some members of our Medical Mission team who awaited our arrival. We reviewed the mission plans and ironed out any outstanding issues.
The meeting with the Interview panel of the Liberia Medical Council was successful and the mission went ahead as planned.
August 11- a one hour live radio broadcast and announcement was made on Radio Advent, Monrovia, Liberia about the purpose, extend and duration of our medical mission. We fielded a lots of questions from the callers and began our patient and caregiver epilepsy education in earnest. We were very encouraged by the number of callers and the questions posed. Indeed we felt that with persistence we would be able to make a great deal of difference in the lives of many patients, caregivers and even the nation with continued effort. During this interview, I touched on the economic and safety benefits (personal, national, vehicular) of having epilepsy patients properly treated and not discriminated against nor stigmatized or ostracized as their timely return to work, school and drive has many benefits , too numerous to count, for the entire nation of Liberia.
August 12- Buchanan Grand Bassa County: we embarked on the Buchanan trip, a nearly two hours trip, at around 6 am. We arrived there on time and after brief introduction, we began our work.
The format was as follows: 15 minutes talk and video sessions (2 videos: First Aid in Epilepsy and What to do when someone is having a seizure); followed by 15-20 minutes Q&A sessions (where we answered questions about seizures but during which we heard some of the most heart wrenching stories of people with epilepsy being severely stigmatized; ostracized and essentially banished from normal society based on the sad but prevailing beliefs that seizure is contagious and so are epileptics or that seizure is because of a curse or witchcraft or “African sign”(a nebulous nonscientific phenomenology). Patient session was from 9 am to 4 pm nonstop. We saw the kids first (as was done at all sites). We saw a total of 125 patients about 40% were kids with varying presentation of chronically untreated epilepsy and the sequelae of severe psychomotor retardation. Intellectual regression and disability; several cases of cerebral palsy; spastic paraparesis. We began to notice from the histories of a lunar and/or circadian rhythm to seizure occurrence. A fuller history was obtained as all the patients spoke Bassa, the regional language, which all members of our team was fluent in. A typical history was; “At the onset of the seizures, they were very frequent but as time went by they became more clustered during the last quarter of the month, from the lull of the moon to its first rise. This was a typical description in about 24 % of the patients. Another 10 % of these patients reported more nocturnal occurrence of their seizures. At first the nocturnal seizures made us think about nocturnal frontal lobe epilepsy which has a genetic basis but the seizure semiology and lack of family history in this subset made that less likely. An interesting use of this phenomenon was observed. Patients who had a lunar or circadian association of their seizures used this pattern to avoid going out or going to work since the stigmatization is brutal and also the lack of anticonvulsants is very real and worrying so this was a sort of adaptive mechanism, sadly.
August 13,: 4pm We embarked on the Gbarnga Bong County trip , a 3 hours distance. We partnered with Dr Edward Guizie, ophthalmologist from the JFK Eye Institute and his staff of 5. Thus we ran a parallel epilepsy and ophthalmologic outreach in Gbarnga. This partnership continued through most of our visit in Liberia. Since we had our mission set for August 14 at 8am to 4 pm,we had to leave for Gbarnga for an overnight stay. Finding lodging and food in Gbarnga was the most difficult part of our journey, to say the least. Up to 10pm on August 13, we still could not find a lodging place for a staff of about 12 people. However with perseverance and extreme determination especially by Janet Zumo, we are able to secure lodging in central Gbarnga. At 11pm August 13 Dr Guizzie and I were allowed to make public service announcements about epilepsy and blindness. Dr Guizzie being a polyglot was able to make the announcement in Lorma, Kpelle, Mandingo, French, and English (if required he would have done so seamlessly in Hebrew as he studied in Israel and fluent in Hebrew). I gave my PSA in English and Bassa (if required, I would have done same in Hungarian).
August 14: 8 am: We met the head of Phebe Hospital . Due to claimed communication issues they were not prepared for us but we made the best out of what we could. We saw about 70 patients at Phebe (about 85% epilepsy; and the rest 12% general neurology cases and about 3% general medical and dermatologic cases, which we referred to the tertiary hospital. Again the presentation format was the same and the level of stigmatization of epileptics the same. We saw several patient with severe burn injuries during seizures
The seizure belt (ie western Bong, southern Nimba, northern Grand Bassa and eastern Grand Gedeh counties. as described by Gadjusek etal (1983) was in full view.
Here we also saw several patients with stroke sequelae as well as several children withs cerebral palsy, at various stages. For the children with potentially salvageable outcomes, we recommended for some of their parents with means to inquire about the Peto conductive therapy method as add on therapeutic means. https://www.treeofhope.org.uk/organisation/peto-institute/.
Due to communication issues, we were told more patients were showing up at Phebe Hospital the day we left. Our nurses communicated with the Phebe Nurses and administrative staff for the care and followup of these patients. These efforts are ongoing at the time of this writing.
We collaborated well with Dr Guizzie and his staff at this site. It is reported that his staff saw more than a hundred patients at this site. Dr Guizzie helped our staff to translate the most important messages of our video in the various vernacular languages and from this site, a commitment was made to take our local Liberian medical staff along with his team (for parallel epilepsy education) whenever they go on medical outreach, after our departure from Liberia. The return trip to Monrovia the evening of August 14 was uneventful.
August 15: Our team visited Mr John Troxell, CEO and Administrative Director of ELWA hospital where we discussed the final details of our site work for August 17 and 18 and had a “dry run” successfully.
August 17 and 18: We were at ELWA Hospital. Everything went smoothly and successfully. We saw a total of 101 patients for those two days with about 35% pediatrics and the rest adults. Included in this number was about 5% general neurology cases. Similar epilepsy semiology as at the other sites was encountered here. The lunar and circadian rhthym phases were prominent here as well. The effects of the stigmatization and social ostracization in the general society was detailed as well. Among the unique clinical syndrome we saw were: tuberous sclerosis in a 17 years old by the characteristic skin lesions and mental retardation; another 62 years old male with a myasthenic syndrome with ocular oropharyngeal progression, on no meds. We were able to prescribe steroids. (mestinon is not locally available either). We were unable to check AchR , MuSK antibodies as these could not be assayed locally. (An interesting phenomenon noted in this gentleman was then whenever he would have more pronounced bulbar symptoms, he would use toothpicks to prick his gum, inducing pain, inciting autonomic hyperactivity which would trigger increased breathing rate and better oropharyngeal aeration. This he reports works for him most of the time). Dr Gono, family medicine resident worked with our team on August 17 while Dr Kokro, family medicine resident worked with our team on August 18. This was a very useful collaboration. Ancillary staff from ELWA who made our work smooth on both days included nurses, nurse assistant, pharmacy techs and security personnel.
August 19: I gave a one hour lecture on staphylococcal meningitis and neurologic sequelae of meningitis in general to the medical house staff of the JFK Medical Center, the main teaching and referral hospital in Liberia. It was a well received lecture where we fielded many questions covering a broad range. After the lecture, due to communication breach and break down in information hand off, we were unable to see the full list of patients slated for consultation . We were however able to see 15 patients with presentations ranging from dementia, traumatic spinal injury with severe sphincter dysfunction; facial tics caused by CPA angle tumor, refractory migraine headache and cerebral vasculitis. Appropriate labs and neuro imagine were ordered. Patient were sent to the lab and imaging center at JFK or t Jahmale Medical Solutions where CT scan, MRI brain and CSF analyses could be done but these had to be outsourced to either Ghana or South Africa where the average turn around results times were in the range of 7 to 10 days. Those patients which could not be seen at JFK this day, flowed over to the patient list at Birth of Life Church Treatment site , Sinkor, Old Road.
August 20; I was graciously invited by Dr Rick Sacra to join the ELWA morning report. After their morning I gave a half hour lecture of clinical epilepsy. Several questions were posed and answered. I then consulted on 2 cases and another 3 cases via teleconsultation. One probably with complicated cerebral vasculitis, another with large hemispheric infarct and another case with carbon monoxide poisoning and long term neurologic sequelae.
August 21: We saw patients at the Birth of Life Church treatment center. Here we did parallel medical outreach with Dr Edward Guizzine and his ophthalmologist team. A similar format of education and treatment was used here as at the other sites. We saw about 70 patients : about 35% kids and the rest adults; in this number, we saw about five patients with parkinsonism, another with cinchonism high frequency deafness after high dose quinine use; one with post traumatic hearing loss after an altercation; one with ophalmopathic secondary to hyperthyroidism based on clinical presentation (she was crossed referred to ophthalmology and general medicine). The others were referred to the appropriate specialties at the referral hospital.
August 22: At a substation, we saw a variety of patients (about 30 in all) with general medical, neurologic and dermatologic conditions as well as one with an occult constellation of symptoms in whom immune deficiency was suspected. After initial triage they were referred to either ELWA or JFK Medical Center with a brief note of our clinical suspicion.
August 24: We visited the borough of West Point, Liberia, a very sad, economically depressed enclave of Monrovia. Navigating our journey there was quite challenging due to the very narrow road and massive overpopulation. We were however able to carry out our parallel medical outreach along with Dr. Edward Guizzine and his team using the usual and customary format that we had adapted. We saw about 38 patients about one third pediatrics and the rest adults. Interesting it was here we saw a gentleman with epilepsy who either heard our radio PSA or either via telephone contact prior to our arrival who made the 395 miles journey from Harper Maryland over 36 hours by sea to see over two days to see use in West Point. This beat the previous distance record set by a gentleman from Voinjama Lofa County who made the 250 miles over land treacherous journey to consult us at the JFK Hospital. An amazing demonstration of perseverance indeed given the poor , mostly impassible roads and poor health sector!)
Here Janet Zumo pairing with aid of the eye team distributed “blind canes” to those visually impaired who were either without canes or were relying on family members to navigate their travels . The rest of the canes were distributed in Sinkor Old under the guidance of Serina Johnson, mission assist and and Marie Peters,community assistant.
August 26: We held a mission review meeting at the home of Dr Sodey Lake, our national medical mission coordinator. This was very magnanimous of her as she was tending to her granddaughter and sister who were earlier involved in a serious motor vehicle accident with one needing overseas orthopedic intervention and another needing intense local medical treatment. Using SWOT analysis, we reviewed the mission work and results in details. A strength analyzed was the willingness for the team to stay the course as well as the enthusiasm of the patients with epilepsy. A n obstacle was the huge inertia on the part of many aspects of the local medical establishment. A threat analyzed was the misinterpretation of our mission by the politicians in the various counties we visited.
August 29: We completed the final registration of our locally registered NGO in Liberia: SAVE HAVEN COMMUNITY SERVICES PROJECT (LIBERIA) in consultation with our legal counsel, Cllr Samuel Kofi Woods who processed most of the documents before our arrival. . We then packed our bags and made arrangements for a musician team and comedian team using a storyline to develop effective audiovisual messages to fight the totally unnecessary and primitive stigmatization of patients with epilepsy.
August 30: we boarded an Air Ivoire flight back to Ivory Coast for final discussion with our Ivorian colleagues and onward to the USA the next day.
SUMMARY: Over a period of 2.5 weeks, we saw a total of 493 patients in three counties of Liberia (Grand Bassa County, Bong County, Montserrado County). Out of the 493 patients, 89% had epilepsy and out of the total number, 35% were pediatric patients. We saw a constellation of various clinical syndromes as well as seizure clustering phenomenon in chronically untreated epilepsy patients who had not yet succumbed to premature deaths and SUDEP, suggestive of a lunar and circadian rhythm pattern as well as the etiologic agents as drivers of the epilepsy belt in Liberia which warrant further and fuller clinical investigation. (As an aside we saw additional between 150 to 160 patients covering the rural areas of Siahn Grand Bassa; Matadi Estate, Tarr Town, Montserrado).
DEPARTMENT OF THE FUTURE;
We contracted with a civil engineer to start the building of the Neurology Outpatient Clinic on land donated by Mr and Mrs Eddie Dunn, mission host and hostess.
Martin Zumo RN, Dr Sodey Lake RN, PhD along with referral to the ELWA Hospital physicians will coordinate care of those patients seen in our absence. Dr Guizzie will continue the medical outreach.
Patients with demonstrable lesions on the neuroimages will be referred to JFK Medical Center where Dr Alvin Doe, neurosurgeon will proceed from there.
Comedy and Musical team collaborative effort for epilepsy education, destigmatization and demystification in action phase;
Our next medical mission is planned for Liberia, October 2020.
Supplemental(Scientific) Medical Mission Report 2019: in progress
Sincerely yours,
Lawrence A Zumo, MD, FAAN
Fellow, American Academy of Neurology
Clinical Professor, European Academy of Neurology
Diplomate, American Board of Psychiatry and Neurology
https://www.springer.com/us/book/9783319010014
REFERENCES
https://www.youtube.com/watch?v=PZYZIU5PEWU (Epilesy Outreach Video, 2019)
https://www.karger.com/Article/PDF/110507 (Gadjusek et al, 1983, Endemic Epilepsy in Bassa, Liberia)
https://www.ncbi.nlm.nih.gov/pubmed/30366868 (Khan et al, Circadian Rhythm and Epllepsy, 2018)