If you or someone in your life was diagnosed with hypertrophic olivary degeneration months, or even years ago and you are struggling to understand what is happening or why, or if you are looking for others who are walking this path, you’ve come to the right place.
We formed the Hypertrophic Olivary Degeneration Association (HODA) to find community and support. Check out our Learn More page, and be sure to subscribe to our email updates. We promise not to spam you!
Know the signs of Hypertrophic Olivary Degeneration
Signs and symptoms can vary widely, like with many neurological diagnoses. Here are some of the most common and less common symptoms that we experience as a community. Please fill out our confidential patient registry with CoRDs today to make sure your symptoms are included in further updates and literature!
Common Symptoms:
- Balance/Gait Unsteadiness
- Nystagmus
- Double Vision
- Fatigue
- Myoclonus
- Palatal Tremor
- Ataxia/Poor Coordination
- Headache
- Numbness
- Pins and Needles feelings that don’t resolve quickly
Less Common Symptoms:
- Spasticity
- Difficulty Swallowing
- Slurred Speech
- Tinnitus
- Tremors
Find this image and it’s explanation on our YouTube channel in an easy to understand What is Hypertrophic Olivary Degeneration video featuring the brilliant Dr. Tipton from our Medical Advisory Board.
What do we know about hypertrophic olivary degeneration?
Not very much, which is why we created the foundation. There is no cure at present, only the treatment of symptoms. We know that the majority of people diagnosed with this rare degenerative brain disease have had a previous brain bleed, brain tumor, brain injury, brain surgery, or cavernous malformation in the cerebellum, brain stem or in the Guillain-Mollaret Triangle. However, we are aware of a few cases that are idiopathic, with no prior brain injury. It is commonly accepted that the inferior olive(s) first swell (hypertrophy) and then atrophy (degeneration). There are two inferior olives in the brainstem. HOD can occur in one or both olives. Learn more here!
HODA Mission Statement
The mission of the Hypertrophic Olivary Degeneration Association (HODA) is to provide support to diagnosed patients and their community, share medically vetted and current information with our community, and raise funding to be applied to research into the disease, including but not limited to: disease origins, treatments and cures for the devastating diagnosis.
Ready to help?
- Read up on what we do know about this disease on the NORD website: Hypertrophic olivary degeneration – NORD (National Organization for Rare Disorders) (rarediseases.org)
- Join the Hypertrophic Olivary Degeneration (HOD) Patients & Family Facebook Group
- Consider donating your brain to science once you are done using it: Brain Donation: A Gift for Future Generations | NIA (nih.gov)
- Choose us as your Facebook Birthday Fundraiser Charity!
- Share your story with us!
- Participate in the CoRDS Patient Registry!
- Buy from our Merch stores! https://www.bonfire.com/store/hoda-merch-store/ or https://merchlink.com/collections/hypertrophic-olivary-degeneration-association
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