A Compassionate Guide to a Rare Neurological Condition
Hypertrophic Olivary Degeneration
Understanding the Journey and Symptoms
Hypertrophic Olivary Degeneration (HOD) is a rare neurological disease that eventually leads to degeneration in the inferior olivary nucleus, located in the brain stem (the structure that connects the brain to the spinal cord). There are two olives. HOD can affect one (unilateral) or both (bilateral). The inferior olivary nucleus is the lower part of the olivary body, an oval structure located on each side of the brain stem that assists in cerebellar motor learning and functioning. HOD is considered unique because the olive initially becomes enlarged (hypertrophic) rather than atrophic (wasted). Over time, the olive goes through atrophy.
The most common symptoms include (but are not limited to): A constant dizzy-like feeling in the head, numbness, spasticity, double vision (diplopia), nystagmus, tinnitus, palatal tremor (myoclonus), poor balance/gait, slurred speech, fatigue, ataxia, poor coordination and difficulty swallowing. Each case is unique to the patient. You may have some or all of these symptoms.
A video series providing clarity and guidance
Hear from the Experts
Insights from Leading Neurologists and Clinicians
Dr. Philip Tipton of The Mayo Clinic, Jacksonville, FL explains HOD in easy to understand terms.
Dr. Pawel Tacik explains the basics of HOD in German
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Born from a personal journey to fill a void
Our Foundation
The Story of Patient Advocacy
When our founder, Christina Coates, was diagnosed with HOD, she scoured the internet trying to find any information on this daunting diagnosis, only to come up virtually empty handed. She had been volunteering for another rare brain disease group, https://www.alliancetocure.org/, which happened to have another member who also was diagnosed with HOD, Erin Loughran. This led her to Erin’s Facebook support group of 100 patients and care givers.
After the initial shock and grief of the diagnosis settled, Christina decided that if anything was going to change, a Patient Advocacy Organization had to be created. Having come from a career in accounting and finance, she was quite ignorant as to what she was signing up for. She recruited her sisters and a retired work colleague, and filed the paperwork to create the patient advocacy organization. Thus, the HOD Association was born.
Of this original group, only her sister Rebecca remains. Together, they are always learning, growing and recruiting anyone who will listen to join the cause. Together, and with their mighty governing and medical boards, they are determined to find treatments and cures for this small community of HOD Heroes!
Empowering the community to accelerate scientific breakthroughs
Your Impact on HOD Research
Research Tools
Now that we have established our place in the rare community, HODA has set its sights on supporting basic and translational research. There is currently no effective animal models of HOD, without which a therapy cannot be developed. This is the focus of our fundraising with a goal to raise $60,000. Will you be a Hero and help us get to our goal?
Refer a Scientist
HODA has research projects underway with every intention of growing the list of projects we support. To be successful, we need a board of expert scientists to guide our mission into the world of biomedicine. Are you a neuroscience graduate student or postdoc looking to make an impact in rare disease? Complete the form below!
Join the Registry!
You hold the missing pieces to the puzzle as a patient or caregiver, your story will inform researchers on what life is like with HOD and lend insights to help them develop new therapies. We’ve partnered with Sanford CoRDS to build a registry of deidentified data provided by the patient community. It is free to participate and totally voluntary.
Our Research Partners
Meet Ollie
Meet Ollie, the HOD Hero. Ollie was born to help our Founder, Christina Coates, cope with her new diagnosis of Hypertrophic Olivary Degeneration (HOD). Ollie wears an eye patch to control the diplopia (double vision) that the HOD has caused. Ollie understands that even though HOD causes disability, it doesn’t take away our ability to be a hero. We have the power to make HOD history! All we have to do is work together, share information, participate and be a part of this fantastic community.
Answering your questions
Frequently Asked Questions
What can I expect with this diagnosis?
Each case is different in how it presents. In a review of our patient registry data, almost all patients experience a constant dizzy-like feeling, double vision, nystagmus in one or both eyes, and some balance problems.
Will this resolve on its own?
We have not yet seen a cured case of HOD. We have seen patients gain coping skills and learn to live with HOD, but no one has been cured to our knowledge.
How long will it take for the olive(s) to degenerate?
This also is a very uniquely presenting factor to each patient. Best estimates are 5-7 year for the hypertrophy, then the atrophy cycle to complete. This is yet another reason why basic research is so important!
Can I still lead a productive life with HOD?
Absolutely yes you can! It will look different from the life that you led before, but it is still a life very much worth living. Many of our patients have found a renewed appreciation for life and all of the little things we take for granted. One key factor is finding community, and connecting with others who understand the journey.
Latest news and insights
Our Recent Articles
Early Motherhood, Disability, and Finding My Own Way
Today, we feature our guest blogger, Emily Johnstone, as she delves into how HOD changed motherhood and parenting. The Many Roles We Play We all have many roles in life—daughter or son, wife or husband, sister or brother, patient or caregiver, mother or father. For me, I am a wife,…
Chronic Illness and Acceptance
‘Acceptance’ is the final installment of our blog series on the Kubler-Ross Five Stages of Grief model, as it applies to chronic illness. It’s a funny thing, trying to write about acceptance when you are nowhere close to being in that headspace. Maybe this is exactly what I need right…
Chronic Illness and Depression
This is the fourth post in our series discussing the Kubler-Ross Five Stages of Grief model as it applies to chronic illness. Did you know that research has found a link between neuro degenerative disease and major depressive disorder (MDD)? It’s true! This study focused on Alzheimer’s, Parkinson’s and Huntington’s…