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	<title>Living With Superficial Siderosis</title>
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		<title>Charting a New Course for Superficial Siderosis</title>
		<link>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/</link>
					<comments>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Tue, 15 Jul 2025 10:30:00 +0000</pubDate>
				<category><![CDATA[Research]]></category>
		<category><![CDATA[research roundtable]]></category>
		<category><![CDATA[superficial siderosis research]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22980</guid>

					<description><![CDATA[Superficial Siderosis Symposium Research Roundtable On June 13, 2025, the final morning of the Superficial Siderosis Symposium, a group of experts on superficial siderosis and audience members gathered for the research roundtable. They set out to answer a deceptively simple question: What has to happen next so we can finally slow, stop, or even prevent &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Understanding Neurological Reserve</title>
		<link>https://livingwithss.com/understanding-neurological-reserve/</link>
					<comments>https://livingwithss.com/understanding-neurological-reserve/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sat, 12 Jul 2025 01:11:46 +0000</pubDate>
				<category><![CDATA[Neurological Reserve]]></category>
		<category><![CDATA[Chronic Fatigue]]></category>
		<category><![CDATA[cognition]]></category>
		<category><![CDATA[neurological reserve]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22964</guid>

					<description><![CDATA[Why It Matters for Superficial Siderosis Suppose you live with superficial siderosis (or care for someone who does). In that case, you may have read on livingwithss.com the term neurological reserve, but what does that mean, and why is it such an essential part of managing life with SS? Think of your neurological reserve like &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/understanding-neurological-reserve/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Welcome Rachel Kenner, New Editor of Living With Superficial Siderosis</title>
		<link>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/</link>
					<comments>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sun, 22 Jun 2025 18:26:02 +0000</pubDate>
				<category><![CDATA[News]]></category>
		<category><![CDATA[livingwithss.com]]></category>
		<guid isPermaLink="false">https://ssra.livingwithss.com/?p=8298</guid>

					<description><![CDATA[Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research I stumbled across, and the &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Ask the Experts: Superficial Siderosis Q&#038;A Panel</title>
		<link>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/</link>
					<comments>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Mon, 02 Jun 2025 20:35:07 +0000</pubDate>
				<category><![CDATA[Live Event]]></category>
		<category><![CDATA[Q&A]]></category>
		<category><![CDATA[symposium]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22918</guid>

					<description><![CDATA[A Rare Opportunity to Ask Questions About Superficial Siderosis in Real Time If you&#8217;ve ever wanted to ask a leading neurologist or medical expert a question about superficial siderosis, this is your moment. On Thursday, June 12, during Patient Day at the Superficial Siderosis Research Alliance Symposium in Cambridge, Massachusetts, we’re hosting a live Q&#38;A &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/feed/</wfw:commentRss>
			<slash:comments>4</slash:comments>
		
		
			</item>
		<item>
		<title>Superficial Siderosis Care</title>
		<link>https://livingwithss.com/superficial-siderosis-care/</link>
					<comments>https://livingwithss.com/superficial-siderosis-care/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sun, 11 May 2025 11:00:15 +0000</pubDate>
				<category><![CDATA[Perspective]]></category>
		<category><![CDATA[healthcare]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22900</guid>

					<description><![CDATA[Accessing Specialist Care in the United Kingdom There are significant differences between the United Kingdom and the United States in how superficial siderosis is diagnosed, referred to, and treated. In the United Kingdom, patients must first consult their local general practitioner (GP) or neurologist within their regional NHS Trust. A referral is required to see &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/superficial-siderosis-care/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>CT Myelography in Superficial Siderosis</title>
		<link>https://livingwithss.com/ct-myelography-in-superficial-siderosis/</link>
					<comments>https://livingwithss.com/ct-myelography-in-superficial-siderosis/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Wed, 07 May 2025 13:48:15 +0000</pubDate>
				<category><![CDATA[Education]]></category>
		<category><![CDATA[ct myelogram]]></category>
		<category><![CDATA[dural leak]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22885</guid>

					<description><![CDATA[Advancements in Detecting Dural Leaks In superficial siderosis, a common cause of bleeding is a defect or tear in the spinal dura, the protective layer surrounding the spinal cord. These defects often cause slow, hard-to-detect cerebrospinal fluid (CSF) leaks. Finding the source of a leak is critical to stopping further bleeding and limiting damage to &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/ct-myelography-in-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>1</slash:comments>
		
		
			</item>
		<item>
		<title>Finding Harmony Through Challenge: Mikko Pettinen’s Story</title>
		<link>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/</link>
					<comments>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Mon, 31 Mar 2025 03:58:17 +0000</pubDate>
				<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[superficial siderosis profiles]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22859</guid>

					<description><![CDATA[A Life Shaped by Music In the heart of Helsinki, where jazz fills the air and creativity thrives, trumpeter and composer Mikko Pettinen has long made his mark on Finland’s vibrant music scene. A seasoned performer with the UMO Helsinki Jazz Orchestra and leader of soul and jazz ensembles like Funky Finns and Why Not, &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Empowering the Superficial Siderosis Community on Rare Disease Day</title>
		<link>https://livingwithss.com/empowering-the-superficial-siderosis-community-on-rare-disease-day/</link>
					<comments>https://livingwithss.com/empowering-the-superficial-siderosis-community-on-rare-disease-day/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Fri, 28 Feb 2025 13:20:49 +0000</pubDate>
				<category><![CDATA[Education]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22842</guid>

					<description><![CDATA[Today, February 28th, marks Rare Disease Day—a global movement dedicated to raising awareness and advocating for the millions of people affected by rare diseases worldwide. At the Superficial Siderosis Research Alliance (SSRA), we are committed to supporting individuals and families impacted by Superficial Siderosis (SS), a rare neurodegenerative disorder caused by chronic bleeding into the &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/empowering-the-superficial-siderosis-community-on-rare-disease-day/feed/</wfw:commentRss>
			<slash:comments>1</slash:comments>
		
		
			</item>
		<item>
		<title>Getting Involved &#038; Raising Awareness</title>
		<link>https://livingwithss.com/getting-involved-raising-awareness/</link>
		
		<dc:creator><![CDATA[Rhys Holmes]]></dc:creator>
		<pubDate>Tue, 16 Jul 2024 16:36:03 +0000</pubDate>
				<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Education]]></category>
		<category><![CDATA[Live Event]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Superficial Siderosis]]></category>
		<category><![CDATA[awareness]]></category>
		<category><![CDATA[engaging]]></category>
		<category><![CDATA[inclusive]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22816</guid>

					<description><![CDATA[Getting involved in events to raise awareness of superficial siderosis. ]]></description>
		
		
		
			</item>
		<item>
		<title>The Cochlear Implant Journey &#8211; A Year On</title>
		<link>https://livingwithss.com/the-cochlear-implant-journey-a-year-on/</link>
					<comments>https://livingwithss.com/the-cochlear-implant-journey-a-year-on/#comments</comments>
		
		<dc:creator><![CDATA[Rhys Holmes]]></dc:creator>
		<pubDate>Sun, 07 Jul 2024 08:33:06 +0000</pubDate>
				<category><![CDATA[Best Life]]></category>
		<category><![CDATA[Education]]></category>
		<category><![CDATA[Hearing]]></category>
		<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[Cochlear Implant]]></category>
		<category><![CDATA[Hearing Loss]]></category>
		<category><![CDATA[Superficial Siderosis]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22774</guid>

					<description><![CDATA[Background It would be an understatement to say it has been life changing for me to have a perception of sound again, however, it is totally different from having naturally hearing (and no, I don’t mean everyone sounds like a robot). It takes the brain a while to adapt and understand new sounds through the &#8230;]]></description>
		
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			<slash:comments>1</slash:comments>
		
		
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