Superficial Siderosis With Rori From Texas Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Superficial Siderosis With Rori From Texas

November 17, 2024 • Joanna • Season 3 • Episode 13

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In this episode of Rare Connection, Joanna sits down with Rori, Vice President of the Superficial Siderosis Research Alliance (SSRA), to explore the complexities of Superficial Siderosis (SS), a rare and progressive neurodegenerative condition. Together, they discuss:

The causes, symptoms, and diagnostic challenges of SS.
Current treatments like chelation therapy and the role of dietary considerations.
The vital work of the SSRA in advancing research and supporting patients.
The ongoing challenges of funding rare disease advocacy and research.

Whether you're living with SS, supporting a loved one, or simply curious about rare conditions, this episode shines a light on the importance of awareness, advocacy, and community.

👥 Guest Information:

Rori: Vice President of the Superficial Siderosis Research Alliance
Learn more about SSRA: SSRA.livingwithSS.org

🌟 Key Takeaways:

Understanding Superficial Siderosis: SS is caused by chronic bleeding into the brain or spinal cord, leading to iron buildup and damage to the nervous system.
Symptoms and Diagnosis: SS can present as hearing loss, ataxia, or cognitive changes, and is often misdiagnosed due to its rarity.
Treatment Options: Chelation therapy can help remove iron buildup, but early diagnosis is critical for managing symptoms.
The Role of Advocacy: SSRA connects patients, raises awareness, and drives research forward, highlighting the importance of collective effort in rare disease spaces.

📝 Episode Links & Resources:

Donate to the SSRA: SSRA.livingwithSS.org
Connect with Rare Connection:
- Website: rareconnection.org
- I am currently trying to turn Rare Connection into a Nonprofit and I need governing board members. Time commitment approximately 20 Hours a week. This is a volunteer job, so you won't be paid, I am looking for a secretary to take meeting minutes, lead the outreach committee as we grow, help with organization and newsletters, and the email list. I also need a treasurer, who is responsible for the financial end of things, budgeting, and leading the fundraising committee as we grow. Meeting time included in estimate. 1 to 2 hours a month committee time estimated between 2 and 4 hours, but it will take time to get that started. if interested email me at jball@rareconnection.org
I am looking to collaborate with medical professionals to offer CE Credits, if you are interested in showing my podcast in your classroom and offering CE credits for it please let me know. All guests are encouraged to bring visuals on to the visual part of this podcast.

Lastly, I am looking for sponsors if you are interested in sponsoring the show please reach out to me at jball@rareconnection.org anything you can give will help. Click the link below to help:

https://www.buzzsprout.com/2204433/support

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Twitter: https://x.com/Rare_Connection

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