by benforred | Aug 5, 2024 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
Storytelling is an important part of rare disease. ‘Share Your Story’. But what does that really mean? Overthinking is often a barrier to the process. What if we share too much, or too little? Perhaps we worry that people will get the wrong impression or... by benforred | Jul 25, 2024 | Living with a Rare Neurological Disease, Patient Stories, Rare Disease Community
By: Emily and Ian Johnstone Emily and Ian have written this story, with some minor edits by HODA Admin My name is Emily. I am a 47 year-old mum of one daughter, Ella, and wife to a husband, Ian. We live in the old city of Oxford in the United Kingdom. Coincidentally,... by benforred | Oct 6, 2023 | Living with a Rare Neurological Disease, Patient Stories
A brief description of Brad’s journey…. by Lauren, Wife (October 5, 2023) The following is an accounting of one patient’s story with HOD. As we know, every patient is different. The stories are different, the symptoms are different. But the human... 
by benforred | Jun 3, 2022 | Living with a Rare Neurological Disease
By: Christina Coates I manage my mental health in a variety of ways, one of which is learning new things. The sheer number of Podcasts that I am subscribed to is mind-boggling. One would rightfully wonder where I find the time to listen to each episode. Everything... by benforred | Jan 7, 2022 | Patient Stories
Helen Busuttil Regenbogen was diagnosed with Hypertrophic Olivary Degeneration (HOD) in 2019. The night before a routine bladder cancer checkup she felt very unwell. Helen had trouble walking and was stuck in her bed. At the checkup, her doctor ran a chest X-ray which...