Exciting opportunity for ANO5 / LGMD2L affected individuals! Muscle imaging, either in the form of muscle MRI, muscle ultrasound, or Cardiac (heart) MRI is an exciting area of clinical research -- not only for the purpose of diagnosis but also for use as an indicator of disease progression over time. Though muscle MRI has been studied, to date, no one has described and documented a significant number of muscle ultrasounds or cardiac MRIs in patients with ANO5 gene mutations (also known as LGMD2L). We are interested in muscle ultrasounds because they are a painless, bedside procedure that can be used to better understand the characteristics of muscle tissue. We are interested in cardiac MRIs because there has been some suggestion that patients with ANO5 gene mutations (LGMD2L) may actually have a dilated cardiomyopathy that should be monitored and potentially treated with preventative care. At the world-renowned National Institutes of Health (NIH) in Washington DC, near the capital of the United States of America, they are offering free cardiac and muscle MRI and muscle ultrasound imaging in order to characterize what muscle looks in neuromuscular disorders. The incentives for ANO5 (LGMD2L) individuals to take advantage of this opportunity are great, and include: 1. Reimbursement of all expenses to travel to the NIH (the visit will span over 1-2 days) 2. Assessment of cardiac function and recommendations based on that - in addition to baseline testing of lung function, skeletal muscle imaging (ultrasound and MRI), and an exam be Dr. Naz Dastgir, a neuromuscular specialist. For more information and to arrange for your visit to the NIH, please contact Dr. Naz Dastgir at [email protected] or PHONE 301-435-1507.
Posted on: Mon, 28 Apr 2014 21:52:33 +0000
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