Rori Daniel

Living With Superficial Siderosis began in 2014 as a personal blog to keep friends and family informed after my husband, Gary, was diagnosed with superficial siderosis. Over time, it evolved into a trusted resource for patients and caregivers navigating this rare condition. In 2019, Livingwithss.com joined forces with the Superficial Siderosis Research Alliance (SSRA), and together we’ve grown into a global voice for research, advocacy, and education. Through shared stories and expert insight, we continue to raise awareness and push for progress—one patient, one breakthrough at a time.

Chelation Therapy
Rori DanielMay 4, 2018
1 143
Understanding Chelation Therapy
The Role Of Chelation In Superficial Siderosis There is some confusion when it comes to understanding chelation therapy and superficial…
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Advocacy
Rori DanielApril 30, 2018
0 33
The Power Of Community
We’re proud to publish the first of many collaborations with blogger and Superficial Siderosis activist Rori Daniel. Find her powerful,…
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Swallow
Rori DanielMarch 5, 2018
4 157
The Danger Of Dysphagia
When Mealtime Becomes Scary Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow,…
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Hearing
Rori DanielFebruary 25, 2018
3 46
New Technology With Hearing Loss
Searching For Clarity With Hearing Loss Conversation for people with sensorineural hearing loss can feel like a never-ending game of…
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Headache
Rori DanielFebruary 18, 2018
5 56
Taming Chronic Headache Pain
Occipital Nerve Blocks For Chronic Headache It was Gary’s first pain-free moment in 12 very miserable years. Complete pain relief.…
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Hearing
Rori DanielJanuary 26, 2018
1 46
The Frustration Of Hearing Aid Down
If hearing aids are your lifeline to the world, you get what a pain it is when one goes down.…
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Treatment Journey
Rori DanielJanuary 11, 2018
6 39
Neurology Roadtrip
Neurology Roadtrip We made the journey to Gary’s quarterly neurology appointment this week to find an answer to his chronic…
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Chelation Therapy
Rori DanielJanuary 4, 2018
0 100
The Deferiprone Trial Results Are In
Does Deferiprone provide a clinical benefit to the superficial siderosis patient? If you remember, the April 2017 edition of The…
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Education
Rori DanielDecember 26, 2017
0 85
Five-Two Diet Plan Update
Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed…
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Superficial Siderosis
Rori DanielDecember 22, 2017
30 2,487
Life Expectancy of Superficial Siderosis Patients
Superficial Siderosis Life Expectancy It’s human nature to wonder How long will I live? When you’ve been diagnosed with a…
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Cognition and Personality
Rori DanielDecember 9, 2017
1 64
Thread of Depression
Stress And Depression Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss,…
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Chelation Therapy
Rori DanielDecember 3, 2017
0 60
Will Superficial Siderosis Chelation Really Work?
We know most Superficial Siderosis patients are full of questions. If you’re one of the few prescribed the iron chelator,…
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Hearing
Rori DanielNovember 26, 2017
0 52
Hearing Loss And The Movies
Technology has made settling in on the couch to watch a good movie inviting once again for those with hearing…
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Treatment Journey
Rori DanielNovember 22, 2017
2 63
The Neuropathy Chronicles 2.0
The Neuropathy Chronicles 2.0 You may remember from The Neuropathy Chronicles how we managed to tame the burning foot pain…
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Headache
Rori DanielNovember 21, 2017
6 125
The Railroad Spike Of Chronic Headache Pain
Living With Chronic Headache Pain Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has…
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Education
Rori DanielDecember 2, 2015
1 56
Life As A Germ Magnet
Life as a germ magnet. A healthy person strolls through daily life never giving a thought to living with a…
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