{"id":2915,"date":"2021-06-24T14:26:51","date_gmt":"2021-06-24T13:26:51","guid":{"rendered":"https:\/\/mft.nhs.uk\/mri\/?p=2915"},"modified":"2025-10-23T14:16:45","modified_gmt":"2025-10-23T14:16:45","slug":"manchester-imid-bioresource-participant-encourages-young-people-to-get-involved-in-research","status":"publish","type":"post","link":"https:\/\/mft.nhs.uk\/mri\/manchester-imid-bioresource-participant-encourages-young-people-to-get-involved-in-research\/","title":{"rendered":"Manchester IMID BioResource participant encourages young people to get involved in research"},"content":{"rendered":"

[vc_row][vc_column]

\n A young lupus patient is encouraging others to take part in research, after she volunteered for the NIHR Immune-Mediated Inflammatory Diseases (IMID) BioResource.\n<\/p>\n[\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Sally Hulse, 22, from Chester, is a patient at the Kellgren Centre for Rheumatology at Manchester Royal Infirmary (MRI) \u2013 part of Manchester University NHS Foundation Trust<\/a> (MFT).<\/p>\n

About NIHR BioResource<\/strong><\/h3>\n

The\u00a0NIHR BioResource<\/a>\u00a0is a network of 13 centres, which connect researchers to suitable volunteers \u2013 both with and without health conditions \u2013 who are available to be recalled for future research. The\u00a0NIHR IMID BioResource<\/a>\u00a0forms part of this national project \u2013 recruiting patients with Immune Mediated Inflammatory Disease (IMID) conditions such as rheumatoid arthritis, psoriasis, and connective tissue diseases such as lupus. The project is a collaboration of northern NIHR Biomedical Research Centres (BRCs) \u2013 Manchester, Leeds and Newcastle \u2013 with MFT acting as lead centre and supported by the\u00a0NIHR Manchester BRC<\/a>, the\u00a0NIHR Manchester Clinical Research Centre (CRF)<\/a>\u00a0and\u00a0The University of Manchester<\/a>.<\/p>\n

Since\u00a0launching in October 2020<\/a>, staff at the Kellgren Centre have recruited more than 220 patients to the IMID BioResource. Sally volunteered during her routine appointment with Dr Ben Parker, Consultant Rheumatologist and Medical Director of the NIHR Manchester Clinical Research Facility (CRF) at the MRI, where she gave a blood sample and completed a questionnaire about her condition and lifestyle.<\/p>\n

\"\"
Sally Hulse, IMID BioResource participant<\/figcaption><\/figure>\n

Sally\u2019s story<\/strong><\/h3>\n

Only 20 per cent of Lupus patients are diagnosed before they are 18. The disease is also more common in women. Sally\u2019s diagnosis came when she was just 15.<\/p>\n

She said: \u201cI was just really unwell \u2013 I\u2019d had flu, developed chest pains, and could never sleep. It took about a year to get my diagnosis with visits to different hospitals. Even though I was young, and it was a bit worrying at first, it was a relief to get my diagnosis.\u201d<\/p>\n

Mild\u00a0symptoms of lupus<\/a>\u00a0can include tiredness and skin and joint problems, while more severe ones can affect the vital organs and even be life-threatening. People with the condition often experience periods where their symptoms become worse (flare-ups) or settle down, and this can have a big effect on their day-to-day-life.<\/p>\n

\n

“I get very fatigued and get to the end of the day and just feel exhausted. There\u2019s also the day-to-day symptoms like headaches, but I\u2019m doing quite well lately, so it\u2019s not as bad as it has been in the past.<\/p>\n<\/div>\n

\u201cI think my medication has been the best it\u2019s been for quite a while, as well as just managing it yourself and learning more about your body, which I guess helps as you get older. I didn\u2019t really understand lupus when I was diagnosed, so didn\u2019t help myself but now I think it\u2019s knowing when to rest and when you\u2019ve had enough and to listen to your body a bit more.\u201d<\/p>\n

\u201cMy closest friends are so understanding of my condition now. Obviously, at first, it\u2019s hard to understand, especially when you\u2019re young. They check up on me and if I\u2019m not feeling up to something then they\u2019ll be alright with it, but there\u2019s always that pressure you put on yourself as you don\u2019t really want to let people down on plans all of the time but sometimes it\u2019s just got to be done.\u201d<\/p>\n

While lupus can start when women reach childbearing age, symptoms can be similar to \u00a0a number of other conditions and this can make diagnosis difficult and mean many people aren\u2019t diagnosed until their 20s and 30s.<\/p>\n

\u201cI think I\u2019ve met one other person who was diagnosed about the same age as me. Other than that, I don\u2019t really know any other young people with it, so I like to chat with her about it so we can understand and relate to each other, which helps me keep going. It\u2019s more relatable, as a lot of people my age just don\u2019t get it, as it\u2019s not well-known.\u201d<\/p>\n

Why Sally wanted to be part of research<\/h3>\n

Having been involved in research before, participating in the IMID BioResource was an easy choice for Sally.<\/p>\n

\u201cI love being involved in research projects and did some on visits to other hospitals too. You feel like you\u2019ve done something useful.<\/p>\n

\u201cMy appointments at the Kellgren have always been with Dr Parker, which has been really great. Signing up to the IMID BioResource was really straightforward and the other staff there just let you know what to do and where to go for each stage and giving samples, and you just get on with it.<\/p>\n

“Obviously it\u2019s not fun to have a condition, but when you can turn it into a positive by being able to help it\u2019s just good to make that little bit of a difference and makes you feel a bit better about it, so it\u2019s always important to take part in studies when I come in to clinic.<\/p>\n

\u201cMy mum was a midwife and has an autoimmune condition herself, so has always supported me with the medical appointments and helped me to understand my diagnosis and treatment. It\u2019s only recently that I\u2019ve started to learn more about healthcare and being involved in research helps with that.\u201d<\/p>\n

With the majority of participants being older, Sally also thinks it\u2019s important for more young people to get involved in research.<\/p>\n

\u201cI\u2019d say do it. You\u2019ve got nothing to lose. It\u2019s a good opportunity for you and helps you understand more about your condition and you\u2019re just helping others as well.<\/p>\n

“I think if doctors and researchers are doing something to help us with lupus, why not help them so they can help us?<\/p>\n

\u201cTo know what care or treatments might be happening in the future and what people are looking into, it gives you a bit more hope for your future as well. That\u2019s why I think it\u2019s important for young people to get involved.\u201d<\/p>\n

Visit the\u00a0<\/strong>NIHR BioResource website<\/strong><\/a>\u00a0for more information, or contact the IMID team on\u00a0<\/strong>IMID@Manchester.ac.uk<\/strong><\/a>.<\/strong>[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

[vc_row][vc_column][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Sally Hulse, 22, from Chester, is a patient at the Kellgren Centre for Rheumatology at Manchester Royal Infirmary (MRI) \u2013 part of Manchester University NHS Foundation Trust (MFT). About NIHR BioResource The\u00a0NIHR BioResource\u00a0is a network of 13 centres, which connect researchers to suitable volunteers \u2013 both with and without health conditions \u2013 who are available […]<\/p>\n","protected":false},"author":2,"featured_media":2916,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5,139],"tags":[131,132,21],"class_list":["post-2915","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research","tag-bioresource","tag-participation","tag-research"],"acf":[],"yoast_head":"\nManchester IMID BioResource participant encourages young people to get involved in research - Manchester Royal Infirmary<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/mft.nhs.uk\/mri\/manchester-imid-bioresource-participant-encourages-young-people-to-get-involved-in-research\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Manchester IMID BioResource participant encourages young people to get involved in research - Manchester Royal Infirmary\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]Sally Hulse, 22, from Chester, is a patient at the Kellgren Centre for Rheumatology at Manchester Royal Infirmary (MRI) \u2013 part of Manchester University NHS Foundation Trust (MFT). 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