WHAT IS XDP?
X-Linked Dystonia Parkinsonism
is an adult-onset, genetic movement disorder which primarily affects males of Filipino descent especially those with ancestry from the Visayas region of the Philippines. It is characterized by dystonic and parkinsonian traits. Dystonia is a neurological movement disorder where muscles contract involuntarily resulting in uncontrollable, repetitive movements or abnormal postures. Parkinsonian traits, on the other hand, manifest in symptoms such as slow movements, lack of facial expression, and tremors.
WHAT CAUSES XDP?
XDP is passed on by genetic carriers or those with an abnormal copy of a gene. The genetic carrier may or may not have the symptoms. In this case, women usually do not have the disease. They can, however, pass the disease onto their male children. These male children have a one in two chance of being afflicted. When the women have female children, they pass on the gene to their daughters but the disease does not manifest in them. Rather, the daughters become obligate carriers—allowing them to pass on the disease to their male children.
LIVING WITH XDP?
Although XDP is a movement disorder that impacts the physical self, it also can impact the patients’ emotional and psychological health. The following factors contribute greatly to a person’s ability to live as well as possible:
- Seek medical care.
- Educate yourself on XDP.
- Talk to other patients affected by XDP.
- Build a support system including other patients, neighbors, family members, and friends.
- If needed, seek mental health care.
The intake of the prescribed medications and regular consultations with your doctor are highly recommended as well.
Research for a Cure
The Sunshine Care Foundation is focused on finding a cure for XDP. For this reason, we currently fund several scientists around the world through the Collaborative Center for X-Linked Dystonia Parkinsonism at the Massachusetts General Hospital (CCXDP). Scientists affiliated with CCXDP are working hard at finding the cure every day. Patients who would like to participate in our research may join our large family pedigree studies and donate blood so that we can better the genetics behind XDP. Because XDP is a disease that affects the brain, patients may also choose to donate their brains to science after they die so that we may speed up finding the cure. For more information, please contact the Foundation at the number below.
At this time, there is still no known cure for XDP. Oral medications (such as anticholinergics and antihistamines), only address the symptoms. Generally, such treatments work for some patients but not for others as patients respond differently to medications. It is important to remember that all medications have side effects. More invasive treatments that a patient may choose to have include botulinum toxin injections and brain surgery called Deep Brain Stimulation (DBS).