{"id":52871,"url":"\/about-me\/","layout":"standard","version":"2025-12-17T20:28:36.000000Z","blocks":[{"id":344151,"type":"textBlock","published":1,"size":{"x":6,"y":0},"order":0,"items":[],"properties":{"html":{"id":3440230,"value":"<p><strong><u>About me, my rare disease and why I want to create rare disease merchandise<\/u><\/strong><\/p>"},"title":{"id":3440231,"value":null},"subTitle":{"id":3440232,"value":null},"paragraph1":{"id":3440233,"value":null},"paragraph2":{"id":3440234,"value":null},"paragraph3":{"id":3440235,"value":null}}},{"id":345593,"type":"pod","published":1,"size":{"x":3,"y":4},"order":1,"items":[],"properties":{"title":{"id":3456656,"value":null},"copy":{"id":3456657,"value":null},"icon":{"id":3456658,"value":null},"badge":{"id":3456659,"value":null},"href":{"id":3456660,"value":null},"overlay":{"id":3456661,"value":"0"},"ratio":{"id":3456662,"value":"square"},"textAlign":{"id":3456663,"value":"center"},"image":{"id":3456664,"value":"{\"src\":\"https:\\\/\\\/images.podos.io\\\/a8h3gf2zupzqe99mfywjnstjwd8pb0afghksbfg09alftsxs.png.png?w=auto&h=auto\",\"alt\":\"\"}"}}},{"id":345594,"type":"textBlock","published":1,"size":{"x":12,"y":37},"order":3,"items":[],"properties":{"html":{"id":3456665,"value":"<p>Hello! I'm Katy, I am 28 from Oxfordshire UK and I am the proud owner of my rare disease ,Scimitar Syndrome. Scimitar Syndrome is a congenital heart defect and due to the cardiac anatomy being tangled up, only 1 lung works, it affects around 1 in 100,000 people and it means regular hospital appointments and a lifetime of uncertainty.<\/p><p>Rare disease has genuinely shaped me in to the person I am today. I started raising awareness of rare disease while at University in 2016, it started with 1 short film with the charity Fixers UK and has developed in to me speaking in front of hundreds of people at events, being on the radio, in newspapers, becoming an ambassador for the charity Invisiyouth and creating my own podcast called 'my rare disease'. My thought was to allow my guests to share their stories whether they are a patient, professional or work in the charity sector and to raise awareness of topics surrounding illness. My aim was to educate people about different conditions and how much it can impact someone not just physically and I was going to be happy if it helped just 1 person however that has grown and since launching it in August, I have had nearly 10,000 tune in which I am so grateful for. In February 2023, I was diagnosed with another rare disease, Antiphospholipid Syndrome, an autoimmune condition which causes blood clots. It was a really difficult time due to having a pulmonary embolism as my first symptom. This condition now requires weekly self-testing to test my blood and daily medication. In 2024 I was then diagnosed with epilepsy, it has been a bumpy ride and this diagnosis is still taking testing, medication adjustment and life changes but I am grateful for some great support around me.<\/p><p>Off the back of my podcast, I have decided to create merchandise to raise money for charity and allow people to buy clothing and bags to continue raising awareness. If you are interested, please follow me on Instagram on @myrarediseasepodcast.<\/p>"},"title":{"id":3456666,"value":null},"subTitle":{"id":3456667,"value":null},"paragraph1":{"id":3456668,"value":null},"paragraph2":{"id":3456669,"value":null},"paragraph3":{"id":3456670,"value":null},"ratio":{"id":3456671,"value":"short"}}},{"id":345640,"type":"pod","published":1,"size":{"x":3,"y":37},"order":2,"items":[],"properties":{"title":{"id":3457180,"value":null},"copy":{"id":3457181,"value":null},"icon":{"id":3457182,"value":null},"badge":{"id":3457183,"value":null},"href":{"id":3457184,"value":null},"overlay":{"id":3457185,"value":"0"},"ratio":{"id":3457186,"value":"square"},"textAlign":{"id":3457187,"value":"center"},"image":{"id":3457188,"value":"{\"src\":\"https:\\\/\\\/images.podos.io\\\/jychkaigzgq5obfhdlcvqhszb6uuhrqpaiu3pgyqfcxqzbju.jpeg.jpg?w=auto&h=auto\",\"alt\":\"\"}"}}}],"properties":{"title":{"id":3440226,"value":"About me"},"description":{"id":3440227,"value":null},"ogImage":{"id":3440229,"value":"https:\/\/images.podos.io\/4lqbzeo2wrxakypewwxzd1bninlraoeeencktmlv88mphdsy.jpg.jpg?w=1200&h=auto"},"userSaved":{"id":3457195,"value":"1"},"isStorePage":{"id":4234249,"value":"1"}},"labels":[],"published":1,"sitemap":1,"divisionId":119571,"edited":true}