by benforred | Jan 5, 2025 | Living with a Rare Neurological Disease, Rare Disease Community
Being angry is easy. Justifiable anger has fueled the lion’s share of my life. I have a very distinct memory of a period where I only listened to Beyonce’s ‘Lemonade’ to and from work every day. This was during a particularly intense salary and promotion... by benforred | Sep 25, 2024 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
Rare disease diagnoses generally come with mental health issues. Oftentimes, we see depression and anxiety go hand in hand with the unknown. An analysis of the de-identified self reported patient data from our HOD Patient Registry shows a clear comorbidity with... 
by benforred | Sep 5, 2024 | Living with a Rare Neurological Disease, Navigating Disability, Rare Disease Community
Why does it seem impossible to locate resources that we need to help us sustain our lives? It seems like everyone wants to help, but nothing is available. There are many organizations around the world that are designed to be resources for all of us in the rare... 
by benforred | Aug 25, 2024 | Living with a Rare Neurological Disease, Rare Disease Community, Uncategorized
New symptom trauma is a very real thing. I have had more than one conversation this month about the life expectancy and rate of decline in HOD patients. I sit here in these early morning hours, feeling like a fraud. You see, I emphatically spoke on the subject,... 
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...