XDP: Basics and Beyond
August 31, 2018 marked a historic moment in the budding narrative of a rare yet severely disabling endemic disease in the Philippines. The Philippine General Hospital (“PGH”) Department of Neurosciences, in partnership with Allergan, Innogen Pharmaceuticals, Fresubin, Medchoice Pharma, Nestle Philippines, Torrent Phamaceuticals, and Unilab-Medichem held the very first X-linked Dystonia Parkinsonism (“XDP”) Lay Forum.
Patients with this disease usually hail from a small group of islands in the region of Panay, Philippines. This disease is inherited and mostly affects males. It initially manifests with involuntary movements which eventually involve parkinsonian symptoms such as slowing of gait and tremors. These symptoms usually progress to catastrophic disfiguring spasms that render the patients essentially helpless and dependent on others for most activities of their daily lives. These symptoms start manifesting around the third decade of life and can progress to death within a span of years – truly a tragic death sentence for our fellow countrymen.
As scientific advances in the field of genetics and pharmacology lead to new discoveries about this disease, it becomes necessary to properly educate patients and caregivers. In this regard, the consultants and residents, led by Dr. Vida Andal, senior resident, and with the guidance of Dr. Dominic Jamora, movement disorder and XDP expert, organized a lay forum which was attended by a large number of XDP patients, their families, and other concerned citizens.
The forum featured lectures on the disease by Dr. Arlene Ng, genetic counseling by Dr. Ma-am Joy Tumulak, nutritional issues by Mrs. Emelita Lavilla, brain banking by Dr. Mark Ang, and research frontiers for XDP by Dr. Jamora. Attendees were made privy to a gamut of integral information not just to understand the disease but more importantly to develop a firmer grasp of the issues around living with the disease and its effects on the lives of the patients and the people around them. A great addition to the event was the individualized nutritional consult offered by the hospital’s Dietary Department. This addressed the concerns of patients when it came to feeding especially since XDP impairs the muscles of swallowing, which make it difficult for the patients to get the recommended daily nutritional demands.
Dr. Gap Legaspi, director of PGH, shared exciting news about a specialized unit for XDP patients and the possibility of surgical management through deep brain stimulation. These future prospects, among many other plans in the pipeline, show the growing positive response of the medical community and the Philippine government to this endemic disease.
Overall, the activity was a great success not only because of the good turnout but because of the healthy and substantial discussion that transpired, which ultimately led to better patient awareness and care. It was a day filled with hope for a better quality of life for XDP patients. This simple yet life-changing activity is a testament that amidst a seemingly dismal condition, there is always room to improve the lives of patients. This is the first of hopefully many future activities that will aid the betterment of the health and quality of life of XDP patients.