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Collaborative Center for X-linked Dystonia Parkinsonism
The Collaborative Center for X-linked Dystonia Parkinsonism (XDP) is committed to helping patients and their families cope with the debilitating aspects of XDP by providing support in the Philippines, where the disease originated.
X-linked dystonia parkinsonism (XDP) is an adult-onset, neurodegenerative disease that primarily affects males with a genetic link to the island of Panay in the Philippines.
Humanitarian efforts are gravely needed in the Philippines for XDP patients, especially patients who cannot access sufficient medical care and social resources. The Center collaborates with a local NGO, The Sunshine Care Foundation, to addressing the complex, myriad factors that significantly affect the wellbeing of patients and families.
XDP often leaves the patient and the entire family at risk of financial debt and instability. Most of the patients, prior to the onset of their disease, are the primary breadwinners of their families. With the loss of this significant income, the family’s ability to pay for the necessities of life including daily food, children’s education expenses, health care costs and home costs is jeopardized.
The lack of daily, nutritious and sufficient food can lead to malnourishment of patients and family members. Further, many patients and their families lack basic health insurance coverage because the yearly enrollment fee for the PhilHealth-sponsored program, the least expensive health care package for indigent families, is too large.
The transportation costs that come with seeking health care professionals and facilities in the Philippines are often too large as well. As the patient’s disability increases over time, the spouse of a patient is usually obliged to become the primary caretaker, causing the spouse to give up any income-generating opportunities. This further leads to financial insecurity.
For many patients, the symptoms of XDP cause difficulties in maintaining relationships with loved ones and upholding patient self-esteem and daily independence. XDP symptoms often include dramatic losses of controlled movement and speech, affecting the patient’s abilities to communicate with others and be out in public. These symptoms can lead to a social isolation and mental illness.
Compounding these problems is the lack of understanding and awareness of the disease throughout local communities. For example, people in the community often believe the disease is infectious, and they show their concern and fear of patients in public.
Also, families often misunderstand the inherited pattern of the disease, leading to acute anxiety and fear. There is a serious need for community awareness and information campaigns for patient’s families, neighbors and the entire community.
The Collaborative Center for XDP supports the following efforts to address these important issues:
Given the physical and financial hardships patients face, it is important to provide services locally on Panay Island. We team with local physicians to assess patients, development a treatment plan and provide medications free of charge.
We hope to expand this successful model to additional provinces on Panay Island so that all XDP patients have access to quality medical care and treatments.
The Center also supports epidemiological studies to determine the number of XDP patients on the island, so that we can plan for future infrastructure and clinical needs. Finally, we sponsor clinical exchange programs bringing Filipino doctors to Massachusetts General Hospital to get additional training, and sending Mass General fellows to Panay to learn more about XDP and assist in patient care.
Stable communication with and monitoring of XDP patients throughout Panay Island is extremely challenging. XDP patients come from and live throughout various rural and urban communities. Many of them live in hard-to-reach areas, given the condition of the roads or effects of storms and floods on vehicle access.
Additionally, consistent communication with patients is difficult because cellular signals can be weak or nonexistent in some areas, or patients cannot afford the price of a cell phone or usage fees. Given these circumstances, there is a need for local representatives that can serve as sources of communication and information to maintain a reliable relationship between health care staff and patients.
Community advocates are local Panay Island residents who oversee a group of XDP patients in the region where they live. They are supported by the Center to frequently visit patients and families in their homes, facilitate patient attendance at clinics through transportation plans, and monitor their symptoms and well-being.
Community advocates also help to identify and recruit new patients to the clinic based on their conversations with community members. Bi-monthly meetings are held for all community advocates in order to discuss their work and gather feedback on improvements and ideas.
All community advocates are family members, usually wives or children, who are directly affected by a person with XDP. They were hired after several focus-group discussions opened to family members were held in Roxas City, where members discussed their experiences and concerns with the patients and their medical care.
Community advocates have shown remarkable initiative and dedication to the caregiving of their patient. The title “community advocates” was chosen by the initial group of family members in a focus-group discussion held early in the program’s start. The community advocate coordinator, Abegail Aguil, oversees all community advocates, providing training and gathering feedback so that we can meet the needs of patients and their families.
In addition to their regular responsibilities, the program has several initiatives in place to improve the care of XDP patients. The first is to improve clinic logistics, taking into account the high volume of patients in attendance and the cost of transportation. Community advocates organize transportation for patients and have created a schedule for patients in order to reduce waiting times.
Another major initiative is to improve the nutrition of patients. A local nutritionist has trained community advocates on basic nutritional concepts, acquiring accurate weight measurements, and preventing chronic diseases such as hypertension and diabetes. During their home visits, community advocates teach and relay this information to patients and their families.
All program expenses, including transportation costs, community advocate stipends and program materials are funded by the Center.
(Content for this page provided by Greta Solinap)
Visit our secure donations page to support the humanitarian efforts of the Collaborative Center for XDP.
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