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 | Feb 13, 2022 | Patient Stories
An interview with Erin Loughran Visit Erin’s Instagram @myinvisiblebff for more and to keep up with her life updates https://youtu.be/cw4hCixnd9s An Interview with an HOD Hero Check out and subscribe to Erin’s blog at :... 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... by benforred | Dec 8, 2021 | Patient Stories
By: Brad Asher 12/2021 In mid April 2017 there was a giant non cancerous tumor found in my left brain on an MRI. I came home 15 weeks later. On May 1 & 2, 2017 I underwent 22 hours of surgery to remove a baseball sized tumor from my brainstem. The non malignant... by benforred | Nov 6, 2021 | Patient Stories
My journey with brain disease begins in 2017. I began having daily migraines that were so painful I couldn’t manage life anymore. I would still push myself and go to work every single day, even though I was in excruciating pain. When I was having migraines, they were...