Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

    Scientists Grow Motor Neurons in the Lab, Offering New Hope to ALS and SMA Communities

    Rare diseases like ALS and SMA cause damage to motor neurons. Often, these conditions lead to death, in part because muscles in the chest are wasted away and the patient…

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    It’s Not Too Late to Register for This Dystonia Event in Rhode Island!
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    It’s Not Too Late to Register for This Dystonia Event in Rhode Island!

    Spasmodic Torticollis/Dystonia or ST/Dystonia, is a non-profit organization whose aim is to support patients suffering from ST, also referred to as cervical dystonia. Dystonia involves involuntary muscle contractions that may…

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    Sarcoidosis Might Have an Surprising Ally in This Notorious Substance

    Researchers at The Ohio State University Wexner Medical Center are curious about how nicotine may effect patients battling sarcoidosis. Sarcoidosis effects everyone differently. It occurs from excess granulomas, often resulting in…

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    Register for This September Pulmonary Hypertension Event Today!

    Time is running out to register for #PHAontheRoad in Pittsburgh on Saturday, Sept. 9th  at the Hyatt Regency Pittsburgh International Airport hotel. This is the @PulmonaryHypertensionAssociation’s last “on the road”…

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    Healthcare Professionals are Getting Together to Make the Pulmonary Hypertension World Better

    If you're a patient of rare disease, it's nice to know that there are medical professionals out there fighting for you. Check out what's happening in the professional world of…

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    China’s Study on Deep Brain Stimulation Shows Long Term Promise for Tardive Dystonia
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    China’s Study on Deep Brain Stimulation Shows Long Term Promise for Tardive Dystonia

    Bilateral deep brain stimulation (DBS) has been known to help with symptoms of dystonia. But for a form of tardive dyskinesia known as tardive dystonia, DBS hasn't been studied as…

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    The Myositis Association (TMA) to Host 2017 Annual Patient Conference

    The Myositis Association (TMA) supports the myositis community, helps to fund myositis research and increases myositis awareness. Registration is currently OPEN for their 2017 Annual Patient Conference. Details below: Who: The…

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    Hopeful News for the European Refractory Generalized Myasthenia Gravis Community

    This month, Soliris®, a treatment produced by Alexion Pharmaceuticals, Inc. was approved by the European Commission for the treatment of Refractory Generalized Myasthenia Gravis (gMG). Myasthenia gravis (MG) is a…

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    Not Your Average Joe: This Man is Debunking Myths for SMA Awareness Month

    In recognition of Spinal Muscular Atrophy Awareness Month, Joe Akmakjian, an SMA warrior/blogger, is promoting a unique understanding of his rare disedsase. Originally published on the Muscular Dystrophy Association's Strongly…

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    What Do You Know About Cannabidiol Drug Interactions?
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    What Do You Know About Cannabidiol Drug Interactions?

    Recent studies have shown promising results that cannabidiol (CBD) helps relieve different forms of epileptic seizures like those from Lennox-Gastaut syndrome and Dravet syndrome. Lennox–Gastaut syndrome (LGS) is particularly severe, childhood…

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