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Often a newly diagnosed superficial siderosis patient, their family, and friends feel overwhelmed. Finding a support network is a must.…
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Getting Involved & Raising Awareness
July 16, 2024
The Cochlear Implant Journey – A Year On
July 7, 2024
Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise
July 1, 2024
A Decade of Strength: Gary’s Journey with Superficial Siderosis
June 15, 2024
Deborah Hatch
February 27, 2024

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About Livingwithss.com

livingwithss.com is the digital magazine publication of the SSRA, your trusted companion in navigating Superficial Siderosis. We are a dedicated community of patients, caregivers, and friends committed to providing the latest medical information, sharing personal stories, and offering a platform for connection and support. Our mission is to empower everyone affected by this ultra-rare neurodegenerative disorder; together, we’re stronger. Join us in our journey towards a future where a Superficial Siderosis diagnosis is no longer a life-altering condition.

The information provided on livingwithss.com is intended for educational and informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your personal physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

THE SSRA

The Superficial Siderosis Research Alliance (SSRA) is a volunteer organization run by patients, caregivers, and friends, dedicated to raising awareness, supporting medical research, and providing resources for those affected by this ultra-rare neurodegenerative disorder. Our commitment to transparency, patient privacy, and sharing up-to-date, approved medical information sets us apart. Join us as we work towards a future where Superficial Siderosis is no longer a life-altering condition.

THE SSRA

The Superficial Siderosis Research Alliance (SSRA) is a volunteer organization run by patients, caregivers, and friends, dedicated to raising awareness, supporting medical research, and providing resources for those affected by this ultra-rare neurodegenerative disorder. Our commitment to transparency, patient privacy, and sharing up-to-date, approved medical information sets us apart. Join us as we work towards a future where Superficial Siderosis is no longer a life-altering condition.

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Recent Comments

Eliot Cardenas
Your story is inspirational, and you attitude is wonderful....
Bena Jo Travis
You’ll be in good hands with Dr Levy! He was the first one I...
Sue O.
Thank you for sharing your story. I have an appt. with Dr. L...
Annie B.
Hi David, This may be off topic from your business; however,...
Jacqueline
My husband was diagnosed last year. We are only at the begin...

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