Op-Ed: The Egyptian and the Holocaust
Drug initiative for rare disorder affecting Ashkenazi community needs prospective candidates for studyClinical trial for Adult Polyglucosan Body Disease (APBD) dependent upon patient registry.
APBD, Adult Polyglucosan Body Disease, afflicts an untold number of Ashkenazi Jews throughout the world and is usually misdiagnosed. Sufferers are often told they have MS, ALS, prostate disease (men), and other ailments which have symptoms similar to APBD. Lives become medical disasters filled with useless surgeries and inappropriate medications; walkers and wheelchairs become an integral part of life.
Today there is an unprecedented opportunity to move towards a cure. An Israeli startup company will consider paying for and running a drug initiative. For its part, the APBD Research Foundation must present a registry of 200 patients with a confirmed diagnosis.
Help is needed from Jewish Community members and leaders.
Even though 1 out of 68 Ashkenazi Jews carries a genetic mutation that can lead to APBD, the patient registry is short. 200 cases must be identified; otherwise a dreamed-of opportunity may be lost.
To help the Jewish community recognize APBD in its early stages, the APBD Research Foundation created a memory tool which is based on the initials of the disease’s name:
• A – Ashkenazi Jewish descent; man or woman Age 40-60 at onset
• P – Peripheral neuropathy (numbness, weakness, or tingling in the toes, fingers,
hands, and/or feet)
• B – Bathroom frequency beyond the norm, or difficulty with bladder control
• D – Diminished energy (May develop later in disease process)
Any man or woman of Ashkenazi Jewish descent who is searching for a diagnosis and sees the A-P-B-D indicators in himself/herself should get tested for the disease called APBD. It’s a simple DNA saliva test that can be collected in one’s home and sent to a lab at Columbia University in New York for analysis. The analysis is being underwritten
by the APBD Research Foundation.
More information about the patient registry and the testing kit can be found at APBDRF.org.
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