Happy Friday! September is a packed with rare disease awareness, as we've been featuring all month long. We wanted to make sure to draw attention to Dystonia Awareness Month, which…
by Lauren Taylor from In The Cloud Copy After completing an internship at the world-renowned Cleveland Clinic, one Ohio teenager is now working on changing the world for dementia patients…
It goes without saying that change is not easy for most people. If life has been a certain way for many years and something alters the course of things, it…
Do you want to make a difference in patient advocacy and rare disease education? Well, here's your chance. Every year, the Dystonia Medical Research Foundation (DMRF) holds a local…
For a lot of us, self-care is difficult. This is for a lot of reasons, some of which might be guilt, not enough time, putting others before ourselves, not sure…
Medtronic’s Percept is the fourth deep brain stimulation (DBS) system that has been approved by the FDA according to a recent article in Parkinson’s News Today. The unique feature…
By Danielle Bradshaw from In The Cloud Copy Cheri Tannenbaum spends her days making 1960s flower child themed clothing and it’s a style that she’s rather fond of wearing too.…
By Jodee Redmond from In The Cloud Copy Dr. Kristina Simonyan has been studying patients with laryngeal dystonia. Through the scope of her work, she has heard numerous anecdotal accounts…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…
In another article I wrote for Patient Worthy, I talked about the emotional pain of “victim mentality” when faced with a health or other life challenge. In this article, I…
People often tell me how upbeat and positive I am, despite living with pain from dystonia all day, every day for the last 20 years. I would say this is accurate…
If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is such an important…
This interview was originally published on the AMADYS website I was recently interviewed by Matthieu Creson for AMADYS to share my experience living with dystonia for nearly 20 years, as…
Have you ever been judged by others for the things you do or the way you live your life? I know this is a rhetorical question because we have all…
When I was 30, I developed a painful neurological movement disorder called dystonia. It totally turned my life upside down where I went from being fully functional and very active,…
Having lived with chronic pain from dystonia for almost 20 years, I spent most of that time focused on treating the physical symptoms. This has been very important and helpful, but for…
According to a story from ScienceBlog, the results of an international research study which was led by a team of scientists in Oakland, California and Munich, Germany, has led to…
IPain The International Pain Foundation (IPain) is a nonprofit organization dedicated to supporting those with chronic pain due to neurological, musculoskeletal, inflammatory, degenerative, and emotional conditions. They aim to improve…
Living with a chronic long-term health condition, can have a devastating effect on someone’s life as it affects everything we do. It’s like finding yourself on a new path without…
I was diagnosed with benign essential blepharospasm at the end of 2015. This is a neurological condition which causes the muscles around my eyes to contract, resulting in uncontrollable blinking…
I have lived with pain almost my entire life. Prior to the age of 30, when I developed chronic pain from a neurological movement disorder called dystonia, I experienced pain primarily…
Bontulinum Neurotoxins (BoNTs) are a protein that are used to treat a wide array of conditions including cervical dystonia, blepharospasm, neurogenic detrusor overactivity, and sialorrhea to name a few. These proteins…
This is an interview I did with Scott Davidson who has a podcast called Living Adaptive, where he interviews people that have adapted to significantly difficult situations in their lives.…
In 2001, I developed severe chronic pain from a neurological movement disorder called dystonia. My life before and after dystonia are as different as night and day. I went from a very active lifestyle to…
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