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.

Hearing

Rori DanielNovember 26, 2017
0 109

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
2 106

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
6 184

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
1 175

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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Treatment Journey

Rori DanielNovember 23, 2015
2 87

A Whirlwind Testing Tour

Hope We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it…
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Neuropathy

Rori DanielNovember 9, 2015
3 394

The Neuropathy Chronicles

The Journey to Relief: Navigating Neuropathy with Traditional Chinese Medicine Imagine a night where sleep is replaced by sharp, burning…
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Depression

Rori DanielNovember 7, 2015
2 96

Punching Through the Brain Fog

Punching Through the Brain Fog Gary and I had both been suffering a lack of focus. The last few months…
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Treatment Journey

Rori DanielAugust 2, 2015
4 140

Quarterly Neurology Follow-Up

Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty…
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Webinars

Rori DanielJuly 28, 2015
3 245

Superficial Siderosis Webinar Transcript

Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download…
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Webinars

Rori DanielJuly 23, 2015
2 171

Superficial Siderosis Webinar

Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what…
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Therapeutic Alternatives

Rori DanielJune 17, 2015
0 234

Benefits of Green Tea

The Green Tea Phenomenon Green tea has surged in popularity recently and for good reasons. Touted for its numerous health…
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Hearing

Rori DanielJune 14, 2015
1 86

Whole New Ballgame: ReSound Linx²

The two-week update on the ReSound Linx² hearing aids The question most asked, “Do you still like the new hearing aids?”…
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Mobility and Balance

Rori DanielJune 3, 2015
1 136

Living On Tilt

Ataxia Issues Gait and Balance 50% of Superficial siderosis patients will learn to live their lives permanently on tilt. Ataxia-related…
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Personal Stories

Rori DanielMay 30, 2015
1 274

A Very Good Day

When the World Begins to Fade Imagine a world where phantom smells fill the air, and life’s melodies gradually fade.…
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Education

Rori DanielMay 21, 2015
2 16,278

Superficial Siderosis Symptoms

Superficial Siderosis Symptoms List There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and…
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