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	<title>Patient stories &#8211; VHL UK/Ireland</title>
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	<title>Patient stories &#8211; VHL UK/Ireland</title>
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		<title>Rad Tingle&#8217;s story</title>
		<link>https://vhl-uk-ireland.org/rad-tingles-story/</link>
					<comments>https://vhl-uk-ireland.org/rad-tingles-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Mon, 01 Jun 2026 09:35:54 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1510</guid>

					<description><![CDATA[I am writing to share my journey living with von Hippel-Lindau (VHL) syndrome since my diagnosis in 2012. While this condition has significantly impacted my life, it does not define who I am. Throughout my treatment at one of the UK’s leading clinics, I have undergone five brain surgeries, spinal surgery, a kidney transplant, and [&#8230;]]]></description>
		
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		<title>Rafael Arevalo’s story</title>
		<link>https://vhl-uk-ireland.org/rafael-arevalos-story/</link>
					<comments>https://vhl-uk-ireland.org/rafael-arevalos-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Mon, 01 Jun 2026 09:29:09 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1507</guid>

					<description><![CDATA[My name is Rafael Arevalo, and I was diagnosed with VHL back in 2009. It is on my moms side of the family. It all started with my eyes, I woke up one day and my vision was a little blurry. After some testing it was discovered that I had some really tiny tumours or [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
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		<title>A Poem For Our Warriors 2023-2024</title>
		<link>https://vhl-uk-ireland.org/a-poem-for-our-warriors-2023-2024/</link>
					<comments>https://vhl-uk-ireland.org/a-poem-for-our-warriors-2023-2024/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Sun, 31 May 2026 07:20:05 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1496</guid>

					<description><![CDATA[VHL UK/Ireland is excited to share ‘A Poem For Our Warriors’. The video consists of real VHL warriors and family members, all affected by the rare genetic condition. Featuring over 20 participants, who have experienced over 100 tumours between them, the video relays a heartfelt poem on the battle with VHL (von Hippel-Lindau Disease), and [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Fiona Reid&#8217;s Story</title>
		<link>https://vhl-uk-ireland.org/fiona-reids-story/</link>
					<comments>https://vhl-uk-ireland.org/fiona-reids-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Fri, 29 May 2026 19:03:27 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1476</guid>

					<description><![CDATA[My name is Fiona Reid, I’m 35 and i was diagnosed with VHL when I was 5 years old.&#160; My mother was a carrier of the gene, which myself and my sister sadly inherited.&#160; The first memory I have is sitting in the waiting room at the children’s hospital in Glasgow waiting to have my [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
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		<title>Brea &#038; Farina’s Story</title>
		<link>https://vhl-uk-ireland.org/brea-farinas-story/</link>
					<comments>https://vhl-uk-ireland.org/brea-farinas-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:45:09 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1393</guid>

					<description><![CDATA[At the age of 5, I was diagnosed with Von Hippel-Lindau (VHL) after being tested for the disease as a result of my father, and many other members of my family, also having VHL. More recently, my little sister Farina received the devastating diagnosis of VHL. Unfortunately for me and Farina, and every single other [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Georgia’s Story</title>
		<link>https://vhl-uk-ireland.org/georgias-story-2/</link>
					<comments>https://vhl-uk-ireland.org/georgias-story-2/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:43:35 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1391</guid>

					<description><![CDATA[21 years ago I found out that I had VHL at the age of 7. Luckily for me I never had any symptoms to be diagnosed with VHL. However, my mum on the other hand was the reason I found out that I had the disease. At such a young age all I can remember [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Kayleigh’s Story</title>
		<link>https://vhl-uk-ireland.org/kayleighs-story/</link>
					<comments>https://vhl-uk-ireland.org/kayleighs-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:39:41 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1388</guid>

					<description><![CDATA[My first symptoms were numbness and pins and needles in my right hand which got missed diagnosed as for carpal tunnel. I went for an emergency MRI and it turned out to be a tumour on my spinal cord in the C1 area. They had organised to have an operation to remove that tumour, however [&#8230;]]]></description>
		
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			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Roxanne’s Story</title>
		<link>https://vhl-uk-ireland.org/roxannes-story/</link>
					<comments>https://vhl-uk-ireland.org/roxannes-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:38:17 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1385</guid>

					<description><![CDATA[My journey with VHL properly started at 11, when they found a hemangioma (tumour on my optic nerve). I remember sitting in the ophthalmologists room, not really knowing what the fuss was about! By 15, I lost sight in the centre of eye, and things changed momentum.&#160; Through the years, I’d seen my grandma, mum [&#8230;]]]></description>
		
					<wfw:commentRss>https://vhl-uk-ireland.org/roxannes-story/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Kat&#8217;s Story</title>
		<link>https://vhl-uk-ireland.org/kats-story/</link>
					<comments>https://vhl-uk-ireland.org/kats-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:36:17 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1380</guid>

					<description><![CDATA[I am a 41 year old wife and Mum with VHL. Last year was the worst year of my life thanks to my VHL. In June ’22, I had one of the most grueling general surgeries you can have for a VHL induced pancreas tumor, called the Whipple’s procedure, which involved the removal of half [&#8230;]]]></description>
		
					<wfw:commentRss>https://vhl-uk-ireland.org/kats-story/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Kim&#8217;s Story</title>
		<link>https://vhl-uk-ireland.org/kims-story/</link>
					<comments>https://vhl-uk-ireland.org/kims-story/#respond</comments>
		
		<dc:creator><![CDATA[Rudy]]></dc:creator>
		<pubDate>Tue, 26 May 2026 16:32:19 +0000</pubDate>
				<category><![CDATA[Patient stories]]></category>
		<guid isPermaLink="false">https://vhldev.rudybtw.uk/?p=1376</guid>

					<description><![CDATA[I noticed sudden vision changes around the age of 14 and was diagnosed with VHL when I was 15.&#160; It took 12 months, and many doctors, for me to get a diagnosis.&#160; My family were all tested for VHL and my biological father, Jim, and younger brother, both had VHL.&#160; My grandfather died from a [&#8230;]]]></description>
		
					<wfw:commentRss>https://vhl-uk-ireland.org/kims-story/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
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