Merz introduces new educational website for patients with focal dystonias

In support of the focal dystonia community, Merz Pharmaceuticals today announced the launch of a new educational website, FocalDystoniaExchange.com, where people affected by certain focal dystonias, as well as caregivers, family and friends, can learn more about the conditions and access helpful resources. For people who suffer from focal dystonias (movement disorders characterized by muscle contractions and spasms that cause twisting and repetitive movements or abnormal postures), completing simple, everyday tasks can be a difficult and challenging process.

FocalDystoniaExchange.com offers educational information about the symptoms and effects associated with focal dystonias, including cervical dystonia (also known as spasmodic torticollis) and blepharospasm, which are the most common forms of focal dystonia. The site also provides information on how people with dystonia can utilize social media tools to share their experiences and related resources with others affected by the condition. In addition, articles of interest and downloadable materials, such as a treatment journal, can be used to help guide discussion between physicians and patients in an effort to manage symptoms and optimize treatment.

Among other features, the website includes a patient journal written by Beka Serdans, R.N., founder of Care4Dystonia, Inc. (www.Care4Dystonia.org), a non-profit organization dedicated to those affected by dystonia.

"FocalDystoniaExchange.com provides a unique combination of online educational resources for patients and their families," says Serdans. "Focal dystonias are very complex movement disorders that may require treatment and lifestyle changes. As a patient and a caregiver, it is heartening to know we can help patients learn how to make these changes by sharing the real-life experiences and examples of others, and give them tools they can use to talk to their doctors about how they can manage the condition and live satisfying lives."

The new site offers various opportunities for patients and caregivers to be recognized for their ongoing dedication to the focal dystonia community. The patient stories section provides a glimpse into real-life patient experiences, and the featured community member page highlights those who are making an impact on the exchange of dystonia information through social media and networking tools. In both sections, visitors have the opportunity to submit their own personal story to potentially be highlighted on the website in the future.

"Merz Pharmaceuticals is committed to raising awareness of focal dystonias and encouraging patient dialogue, especially for lesser-known conditions such as cervical dystonia and blepharospasm," said Jack Britts, President and CEO of Merz Pharmaceuticals, LLC. "We hope that patients and their families will benefit from this new online resource as they seek information about managing focal dystonias."

Source:

Merz Pharmaceuticals

Comments

  1. Judy Judy United States says:

    It's sooo nice that this huge pharmaceudical company is spending time and some money putting up a web site ABOUT Dystonia (and ST), but how about concentrating their efforts and funds on finding MEDICATIONS that actually help ease the horrible effects of this condition?  PLEASE!

  2. Tom Hennessy Tom Hennessy Canada says:

    There HAVE been some inroads made into WHAT can cause dystonia. A problem just being recognized is called age-related iron accumulation. Iron is KNOWN to cause dystonia and when targeted recovery happens. In a disease with no known cause it is heartening WHEN a cause is found. WHY then is NOT the ONE treatment KNOWN to induce recovery NOT being researched WITH 'extreme prejudice' .. ?

    "Dystonia in neurodegeneration with brain iron accumulation:
    outcome of bilateral pallidal stimulation"

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