I am Nic and I am knocking in your heart to help me to raise a fund for Deep Brain Simulation surgery to treat my rare congenital neurological disorder called Sex Linked Dystonia Parkinsons or Sex linked recessive dystonia parkinsonism of Panay, Philippines (XDP).
This was me before and after XDP Attacked my system. I am working as seafarer before for almost 10 years in contractual basis and under different manning agency,My last disembarkation was September 2017. The symptoms started to appear last December 2017 where my eyes were experiencing uncontrollable blink and my neck is twisting to right involuntarily; Until my neurologist told their first impression as XDP.
What is XDP?
Sex linked dystonia parkinsonism (XDP), also referred to as “lubag” in American literature, was described in 1975 occurring endemically in Panay, Philippines. It is an adult onset, sex linked, predominantly male, severe, progressive movement disorder with high penetrance and a high frequency of generalisation. The movement disorder is characterised by dystonic movements, usually starting in the 3rd or 4th decade, spreading to generalisation within two to five years. The dystonia coexists or is replaced by parkinsonism usually beyond the 10th year of illness. No treatment has been found to be effective. Neuroimaging shows caudate and putamenal atrophy in patients reaching the parkinsonian stage. Neuropathology reveals pronounced atrophy of the caudate and putamen, mostly in the cases with long standing illness. The sex linked pattern of inheritance has been established. Genetic studies have located the affected gene (DYT3) to Xq13.1, with one group mapping the XDP gene to a < 350 kb locus in the DXS 7117–DXS 559 region.
Sex linked recessive dystonia parkinsonism (XDP) is a movement disorder unique to adult Filipino men whose ancestries can be traced to Panay Island, Philippines. It is characterised by severe, progressive torsion dystonia, which dominates the first 10 to 15 years of the illness and is associated or replaced by parkinsonian features in the later years of life.
The presence of a high concentration of patients with XDP was first noted in the 1970s, when Dr GH Viterbo, of Roxas City, Capiz (a province of Panay) referred five of the six cases labelled as “dystonia musculorum deformans” to the neurology section of the Philippine General Hospital. This initiated an epidemiological survey, which resulted in the first paper published in 1976.1 Lee et al described 28 adult male patients with torsion dystonia, and 23 came from Panay Island. Six families had more than one affected male. No male to male transmission occurred; hence, the inference of sex linked recessive transmission. In addition, it was noted that some patients had parkinsonian features and relatives with parkinsonism. The phenotype of XDP was described in 42 male patients from 21 families in 1991.2 Lee et al emphasised that XDP is a movement disorder, which manifests primarily as dystonia in combination with parkinsonism. Fahn et al confirmed the coexistence of dystonia and parkinsonism in XDP.3 Fahn called the disease “lubag” based on the term used by the Ilongo speaking Filipinos to describe any movement characterised by torsion, including children with cerebral palsy.
Twenty five years after the first report, the natural history of sex linked dystonia parkinsonism has unfolded to show that, indeed, XDP is a combination of dystonia and parkinsonism presenting initially with the more disabling dystonic movements in the 3rd and 4th decade, with a subsequent diminution of movements, such that a parkinsonian-like state replaces the picture, usually beyond the 10th year of illness. Bradykinesia and postural instability, festinating gait, and blepharospasm are seen, but plastic rigidity and cogwheeling are infrequently seen.
For more details, pls click the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11871...
What is DBS?
Click here to download our leaflet on Deep brain stimulation.
Deep brain stimulation (DBS) is a surgical procedure in which two thin, insulated electrodes are inserted into the brain. These electrodes are then connected by a wire under the skin to a battery usually implanted in the chest or in the abdomen. The battery operates similarly to a pacemaker delivering targeted electrical pulses that block the signals that cause the symptoms of dystonia.
The battery is implanted below the skin on the chest wall (or sometimes the lower abdominal wall) so is barely visible but an outline of its shape and of the wires connecting it to the brain may be visible.
How does it work?
The carefully controlled, minute electrical currents delivered through the electrodes on both sides of the brain can have a beneficial effect on the involuntary muscle contractions caused by dystonia. As a result, the symptoms of dystonia such as abnormal movements and postures and/or dystonic tremor can be eased. In addition, DBS can reduce the pain caused by dystonia. The electrodes are usually implanted into an area known as the Globus Pallidus Interna (GPi). Stimulation of this area is known as pallidal stimulation. Occasionally, another part of the brain, the thalamus, is targeted instead.
For more details, click this: https://www.dystonia-foundation.org/living-with-dy...
On the other hand, I am still thinking to do it by non surgical procedure. I watched the video of Dr. Joaquin Farias who is a believer of neuroplasticity from Canada to carry out s therapy. But still, I need this amount to support my therapy. Watch his video: