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FIGHTING
DYSTONIA
JUN BUENAFLOR

Hello, I'm Jun Buenaflor from the Island of Panay in the province of Iloilo, Philippines. I went to the USA to seek medical attention for my illness X-Linked Dystonia-Parkinsonism (XDP). After almost 2 years in the USA I did not get the treatment I was hoping for which is DBS or Deep Brain Stimulation because it is too expensive. Recently, I heard that DBS will soon be available in the Philippines so I went home and meet with the doctor who is a part of the team that will perform the DBS. They are planning to do the surgery either late this year (2008) or early next year (2009).

So, how did this started? It started in August 2004, I was 33 years old then. I begun to blink excessively, so in September 2004 I went to an ophthalmologist who to my surprise referred me to a neurologist. As I walked into the neurologists office she can tell right away. She asked about family background and then sentenced me, "you have XDP and there is no cure, your condition will deteriorate until your whole body will be twisted, you may live until the age of 60 but do not be too optimistic". XDP is a genetic illness, my Mom is the carrier and she passed it to me.

XDP have no known cure but the surgical procedure called Deep Brain Stimulation (DBS) will stop XDP. It comes with some kind of a remote control which enables you turn on or off the stimulator. So, if you turn it off almost instantly XDP will start again.

What is my condition now?
  • Blepharospasm - excessive blinking of the eye
  • Eyelid Apraxia - difficulty opening of the eye
  • Cervical Dystonia - head and neck twisting to the left shoulder in a repeated manner, sometimes the twisting stops and my head is stuck to my left shoulder, and its painful
  • Dysphonia - affects talking, singing, swallowing of food, current condition: mild
  • Axial Dystonia - twisting of the torso but not all the time, in certain body positions only and is at its worst when sleeping
  • Distorted left arm - left arm twists inwards and experiencing numbness of the last two fingers all the way down to the elbow
  • Bradykinesia - slow movement, tremor, rigidity, a loss of postural reflexes and balance
  • Gait shuffling and toes pointing upward - affects walking, cant walk very far and has tendency of losing balance and then fall
TREATMENT

In the USA:
Mayo Clinic
Scottsdale Campus
13400 East Shea Boulevard
Scottsdale, Arizona 85259
Phone: (480) 301-6711

Under the care of:
Virgilio Evidente, M.D.
Co-Director, Deep Brain Stimulation Program
Department of Neurology

In the Philippines:
St. Luke's Medical Center
279 E. Rodriguez Sr. Boulevard
Quezon City, Philippines 1102
Phone: (632) 723-0101 | (632) 723-0301

Under the care of:
Dominic Jamora, M.D.
Neurologist
Movement Disorder Department

I have Botox injections in the eyes and neck every 3 months. Four (4) injections in each eye and 9 injections in the neck.

Medication

Generic Name Dose Frequency
Klonopin Clonazepham 2mg 3x/day
Trihexyphenidyl Artane 5mg 3x/day
Zolpidem Stilnox 2mg 3x/day

I NEED YOUR HELP...

Hello, I'm Jun Buenaflor, I'm suffering from an illness called X-Linked Dystonia-Parkinsonism (XDP). It is a devastating neurological movement disorder characterized by involuntary muscle contractions that force certain parts of the body into abnormal twisting, contorted, sometimes painful, movements or postures. The causes of Dystonia are unclear. There are few treatment options for Dystonia patients; no known cure exists for the disease. * View video.

I hope to undergo Deep Brain Stimulation to stop XDP but I do not have insurance so its a big problem, I need your help.

* The video file is 6MB+ so you will need DSL or any Broadband connection to download it faster, the video is about Dystonia and Deep Brain Stimulation (DBS). You will need Windows Media Player to play the video.

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