{"id":160925,"date":"2026-02-25T15:57:28","date_gmt":"2026-02-25T15:57:28","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=160925"},"modified":"2026-02-25T16:01:15","modified_gmt":"2026-02-25T16:01:15","slug":"hitting-the-same-brick-walls-a-mother-and-daughters-experience-of-rare-disease","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2026\/02\/25\/hitting-the-same-brick-walls-a-mother-and-daughters-experience-of-rare-disease\/","title":{"rendered":"Hitting the same brick walls: a mother and daughters\u2019 experience of rare disease"},"content":{"rendered":"\r\n<p>A rare kidney condition continues to severely affect the lives of a mother and daughter from Weymouth,\u00a0with\u00a0little improvement\u00a0in care despite\u00a0more than\u00a025 years passing between their diagnoses.\u00a0\u00a0<\/p>\r\n<p>Nicola and Emilie Hilton live with\u00a0a genetic form of\u00a0Fanconi syndrome,\u00a0which\u00a0causes\u00a0rickets and kidney failure.\u00a0Nicola&#8217;s kidneys failed\u00a0when she was\u00a038 years old, and\u00a016-year-old\u00a0Emilie faces\u00a0a similar\u00a0future\u00a0if there are no\u00a0medical\u00a0advances to\u00a0help\u00a0protect her kidney function.\u00a0<\/p>\r\n<p>Fanconi syndrome is one of more than 150 kidney disease that are classified as rare because they affect fewer than\u00a0one\u00a0in 2,000 people.\u00a0Patients with these\u00a0diseases often face significant diagnosis delays, inconsistent\u00a0care\u00a0and long waits for new treatments.\u00a0While individually these diseases are rare, they are collectively common, affecting over 160,000 people in the UK,\u00a0as\u00a0we\u00a0recently\u00a0described\u00a0in our report,\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/about-us\/policy\/rare-diseases-report\/\">Collectively common: the devastating impact of rare kidney diseases in the UK<\/a>\u00a0\u00a0<\/p>\r\n<p>Nicola, 44, says:\u00a0&#8220;There just\u00a0isn&#8217;t\u00a0the knowledge and understanding of our condition within the healthcare system because\u00a0it&#8217;s\u00a0so rare, even though so many years have passed since I was diagnosed.\u00a0Both Emilie and I faced long waits to receive a diagnosis and not much has changed in how\u00a0we&#8217;ve\u00a0been treated.\u00a0It is\u00a0really\u00a0frustrating.&#8221;\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Nicola and Emilie Hilton 3\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/02\/Nicola-and-Emilie-Hilton-3.jpeg\" alt=\"Mother wearing a face mask, standing next to hospital bed that daughter is in\" width=\"1500\" height=\"2000\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Nicola and Emilie Hilton 3\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/02\/Nicola-and-Emilie-Hilton-3.jpeg\" alt=\"Mother wearing a face mask, standing next to hospital bed that daughter is in\" width=\"1500\" height=\"2000\" \/><\/noscript>\r\n<figcaption>Nicola and Emilie Hilton<\/figcaption>\r\n<\/figure>\r\n<h2>Matching diagnoses<\/h2>\r\n<p>Nicola was diagnosed with Fanconi syndrome at 13 years old &#8211; three years after first experiencing symptoms.\u00a0\u00a0<\/p>\r\n<p>She says: &#8220;I felt a lot of pain in my knees and joints which caused me\u00a0problems\u00a0with mobility.\u00a0Despite seeing many doctors and having several tests and x-rays, none were able to\u00a0identify\u00a0the cause.\u00a0I was\u00a0undiagnosed for such a long time that the bone disease\u00a0progressed significantly, leaving me needing to use a wheelchair.\u00a0\u00a0<\/p>\r\n<p>&#8220;When I was finally diagnosed with Fanconi syndrome, it\u00a0transpired\u00a0that the condition\u00a0was\u00a0evident\u00a0on those early x-rays, but because\u00a0it&#8217;s\u00a0so rare,\u00a0it needed the knowledge of a specialist to spot it.\u00a0<\/p>\r\n<p>&#8220;Emilie began experiencing similar symptoms at\u00a0ten\u00a0years old and\u00a0I thought it was far too coincidental. However, I was told my condition was not genetic\u00a0and\u00a0Fanconi syndrome was initially ruled out\u00a0by our GP.\u00a0\u00a0<\/p>\r\n<p>&#8220;It took seven months for us to see a paediatrician, and we were then told\u00a0we&#8217;d\u00a0need to wait another six months\u00a0while\u00a0Emilie&#8217;s health was\u00a0monitored.\u00a0All the while her pain was getting worse, just as mine had. I pushed for her test results to be reviewed by a specialist, and they\u00a0identified\u00a0Fanconi syndrome straight away.\u00a0Without my own experiences, we would have been waiting much longer for Emilie&#8217;s diagnosis.&#8221;\u00a0\u00a0<\/p>\r\n<h2><b>Fanconi syndrome and its impact<\/b>\u00a0<\/h2>\r\n<p>Nicola and Emilie have dealt with almost identical symptoms, challenges, medication and outlooks for their condition. \u00a0<\/p>\r\n<p>Nicola says: &#8220;I missed a lot of school because of hospital appointments. It damaged my friendships and Emilie has experienced bullying. She uses a wheelchair when pain reduces her mobility, and other teenagers don&#8217;t always understand that. It is hard having a disability that is often hidden. Thankfully she has a good group of friends now.\u00a0<\/p>\r\n<p>&#8220;My <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/stages-of-kidney-disease\/\">kidney function<\/a> declined over many years until they failed in 2019.\u00a0We&#8217;ve\u00a0been told to expect that Emilie&#8217;s kidneys will fail\u00a0too\u00a0&#8211;\u00a0probably at\u00a0a similar age to mine.\u00a0I needed a pre-emptive transplant via the kidney sharing\u00a0scheme, which matched me and my brother to a compatible donor and recipient pair. That prevented me needing <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/dialysis\/\">dialysis<\/a>.\u00a0\u00a0<\/p>\r\n<p>&#8220;A transplant is not a cure, and I know it is likely I will need another. The immunosuppressive medication I need to protect my kidney can be unpleasant and I&#8217;ve had a few episodes of transplant rejection. Thankfully, I&#8217;ve overcome those and my kidney function has been stable for the past 18 months.&#8221;<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Nicola and Emilie Hilton 2\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/02\/Nicola-and-Emilie-Hilton-2-375x500.jpeg\" alt=\"Mum and daughter doing a selfie in the car\" width=\"375\" height=\"500\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Nicola and Emilie Hilton 2\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/02\/Nicola-and-Emilie-Hilton-2-375x500.jpeg\" alt=\"Mum and daughter doing a selfie in the car\" width=\"375\" height=\"500\" \/><\/noscript>\r\n<figcaption>Nicola and Emilie<\/figcaption>\r\n<\/figure>\r\n<h2>Looking to the future<\/h2>\r\n<p>While Nicola&#8217;s own future remains uncertain, her focus is on making sure Emilie receives the best care possible.<\/p>\r\n<p>Nicola says: &#8220;When we found out Emilie will one day need a kidney transplant, it was devastating to realise I could never be her donor because of my own health problems. You&#8217;d do anything for your children, but I can&#8217;t give her what she needs the most.<\/p>\r\n<p>&#8220;Instead, I am providing her with understanding from my own experiences to try and make life easier. I am helping her manage her pain and supporting her to protect her kidney function for as long as possible by following guidance on diet and hydration.<\/p>\r\n<p>&#8220;I was told growing up that my kidneys failing was inevitable. However, speaking with other patients and charities has made me realise that it\u00a0doesn&#8217;t\u00a0have to be. There is so much that can be done\u00a0to improve treatments and\u00a0protect Emilie and future generations from kidney failure.\u00a0I&#8217;m\u00a0determined\u00a0to be part of\u00a0supporting organisations like Kidney Research UK and\u00a0LifeArc\u00a0to\u00a0achieve this.&#8221;<\/p>\r\n<h2>Real life stories<\/h2>\r\n<h2>Why not make a donation now?<\/h2>\r\n<p>Every \u00a3 counts towards transforming treatments for people living with kidney disease.<\/p>\r\n<p><a href=\"https:\/\/kidneyresearchuk.org\/support\/donate\/\" target=\"_self\"> Donate now <\/a><\/p>\r\n","protected":false},"excerpt":{"rendered":"<p>A rare kidney condition continues to severely affect the lives of a mother and daughter from Weymouth,\u00a0with\u00a0little improvement\u00a0in care despite\u00a0more than\u00a025 years passing between their diagnoses.\u00a0\u00a0 Nicola and Emilie Hilton live with\u00a0a genetic form of\u00a0Fanconi syndrome,\u00a0which\u00a0causes\u00a0rickets and kidney failure.\u00a0Nicola&#8217;s kidneys failed\u00a0when she was\u00a038 years old, and\u00a016-year-old\u00a0Emilie faces\u00a0a similar\u00a0future\u00a0if there are no\u00a0medical\u00a0advances to\u00a0help\u00a0protect her kidney function.\u00a0&hellip;<\/p>\n","protected":false},"author":3,"featured_media":160926,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[30],"tags":[],"class_list":["post-160925","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Hitting the same brick walls: a mother and daughters\u2019 experience of rare disease - Kidney Research UK<\/title>\n<meta name=\"description\" content=\"A rare kidney condition severely affect the 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