Father and son die from same rare genetic syndrome
A mother from Kent shares her heartbreaking story after losing her husband and son to Alagille Syndrome. She now runs a bereavement group to support others. Read her powerful message.
Category : Search result: rare disease treatment
Father and son die from same rare genetic heart syndrome
A mother from Kent speaks out after her husband and son died from Alagille Syndrome, a rare genetic disorder. She now runs a bereavement group to support others. Read her story.
Mum's plea for £5 NHS heel prick test for SMA
A mother backs a Mirror campaign for routine SMA screening after her son's late diagnosis. A £5 test at birth could prevent needless paralysis, she says.
Jesy Nelson twins diagnosed with rare genetic disease SMA
Pop star Jesy Nelson reveals her newborn twins have spinal muscular atrophy. Learn the early signs of SMA Type 1 and why early diagnosis is crucial for treatment.
Jesy Nelson twins diagnosed with rare genetic disease
Pop star Jesy Nelson reveals her newborn twins have spinal muscular atrophy. Learn the early warning signs of SMA Type 1 and why early diagnosis is crucial.
Jesy Nelson's twins diagnosed with rare SMA disease
Former Little Mix star Jesy Nelson reveals her newborn twins have SMA Type 1. Experts explain the crucial early warning signs of this rare genetic condition that all parents should watch for.
Jesy Nelson's twins diagnosed with rare muscle condition
Former Little Mix star Jesy Nelson reveals her twins have SMA-1, a rare muscle disease. Doctors commend her for raising awareness of the symptoms that affect 70 UK babies yearly.
Mum paralysed after 3-year wait for rare disease diagnosis
Victoria Johnston's life was upended when she collapsed at work. After a near three-year diagnostic delay for rare CIDP, she's campaigning for faster UK treatment. Read her story.
Mum, 35, paralysed after rare CIDP diagnosis delay
Victoria Johnston, 35, was fit and healthy when she collapsed and was paralysed. Her 3-year battle for a CIDP diagnosis highlights UK treatment delays compared to the US. Read her story.
Mum's Guillain-Barré Nightmare: Trapped in Own Body
Rebecca Louise Love, 29, shares her terrifying battle with Guillain-Barré syndrome, a rare disease that left her paralysed. Discover her fight for recovery and the vital lesson she learned.
Mum's Guillain-Barré Nightmare: 8 Weeks in Hospital
Rebecca Louise Love, 29, shares her harrowing battle with Guillain-Barré syndrome, a rare nerve condition that left her paralysed. Discover her fight for recovery and vital lessons learned.
Mum diagnosed with Addison's after sleeping through son's birthday
A Scottish mum's extreme fatigue, including sleeping for 24 hours, led to a life-threatening Addison's disease diagnosis after years of being told she had anxiety. Read her fight for answers.
Woman with rare 'butterfly' disorder defies odds at 41
Emma Fogarty, one of the oldest survivors of Epidermolysis Bullosa, shares her story of defying medical predictions and her unique bond with actor Colin Farrell. Discover her journey of pain, resilience, and hope.
Newborn's fight against rare HLH disease after sudden fever
A newborn baby's life turned upside down by a rare autoimmune disorder. His parents share their story and hope as he prepares for a bone marrow transplant. Read their emotional journey.
Crohn's sufferer vomited faeces after misdiagnosis
Lucy Dare, 21, shares her harrowing journey with Crohn's disease, from being misdiagnosed with an eating disorder to a life-threatening bowel perforation. She urges others to seek help for symptoms.
Genome testing transforms diagnosis for rare child conditions
A landmark NHS study reveals whole genome sequencing is diagnosing rare genetic conditions in children two years earlier, transforming care for families like three-year-old Nathaniel's.
UK boy is only person in world with deadly condition
Oli-Jay Morris, 2, is the only known person with a unique gene mutation. His family are fundraising £14,000 for a personalised treatment plan to save his life.
Gene Therapy Breakthrough for Hunter Syndrome in UK
A groundbreaking gene therapy developed in Manchester offers new hope for children with Hunter syndrome. Three-year-old Oliver Chu shows remarkable progress nine months after treatment.
Boy, 4, diagnosed with rare childhood dementia
A Swansea mum is in a desperate race against time after her four-year-old son Tate was diagnosed with Sanfilippo Syndrome, a rare and terminal childhood dementia.
Ruth Wilson reveals rare disease diagnosis after 5-year struggle
Emmy-winning actress Ruth Wilson opens up about her debilitating mystery illness and the frustrating five-year search for answers that led to a rare disease diagnosis.
Daily Exercise Can Beat Heart Disease Symptoms
New research reveals how moderate daily activity can significantly reduce coronary heart disease risk and symptoms. Discover the life-changing benefits of consistent exercise for your heart health.
Bullied for weight: Teen's rare genetic disorder revealed
A mother reveals how her daughter endured cruel bullying for years before doctors discovered her weight struggles were caused by rare Bardet-Biedl syndrome, exposing the hidden reality of genetic disorders.
ALS Breakthrough: Scientists Discover Disease Causes
Groundbreaking research reveals three major pathways causing ALS, offering new hope for targeted therapies that could slow or stop the devastating neurodegenerative disease's progression.
Mum with rare dementia forgets children's names
The devastating story of Sarah, a mother with rare dementia who can no longer recognise her own children, as her family fights for access to revolutionary treatment that could save her.
NFL's Nick Mangold reveals kidney disease diagnosis
Former New York Jets centre Nick Mangold reveals his private health struggle with kidney disease in an emotional interview, sharing his journey from NFL glory to facing a life-changing diagnosis.
Boy, 11, wakes up unable to walk or speak
A mother's terrifying ordeal as her healthy son suddenly develops rare neurological condition ADEM, sparking urgent NHS investigation into childhood illness.
Isabelle Tate: 911 call reveals rare disease tragedy
Exclusive insight into the final moments of Isabelle Tate's life and the devastating impact of Charcot-Marie-Tooth disease that led to the Nashville 911 tragedy.
Child's battle with rare disease stealing her ability to walk
The heartbreaking story of Isabelle Tate, a young girl from England fighting Charcot-Marie-Tooth disease, a rare genetic condition threatening her ability to walk and enjoy a normal childhood.
NHS 10-minute robotic prostate surgery cuts waiting lists
Exclusive: British surgeons pioneer revolutionary robotic prostate procedures that take just 10 minutes, offering new hope for thousands stuck on NHS waiting lists. Discover how this medical breakthrough is transforming cancer care across the UK.
Teen's death from rare Charcot-Marie-Tooth disease
The heartbreaking story of Isabelle Tate, a vibrant teenager whose life was cut short by the little-known genetic condition Charcot-Marie-Tooth disease, sparking urgent calls for greater awareness and research funding.
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