Dylan’s Story
This is Trudi’s and Shane’s beautiful son Dylan.
He was born with a severe type of mito back in 2007, at that time not much was known about mito.
Jazmín’s story
Our Jazmín was 16 years old, when her heart said enough on the 6th of June this year. She was 13 years old when she was diagnosed with MELAS, a mitochondrial disease with no cure, a rare mutation in my country.
Tucker’s Story
Tucker James Dupré was diagnosed with POLG at 18 months old, after having multiple seizures. Tucker went into status epilepticus just two weeks before his 2nd birthday, resulting in him having a metabolic stroke.
Matei’s Story
Matei was born on August 5th 2018, being an extremely healthy child. He has had an exciting development period. From the newborn to an active toddler he reached all the milestones that a child is doing. He was laughing so much, and, he was enjoying so much making others laughing. Before choosing his name, we called him “Happy”.
Updated TK2d infographics to download
Help raise awareness of the symptoms of TK2D by sharing our fantastic infographics. We’ve slightly updated these from 2023, so please do replace your older graphics with these ones.
Download the version in English or landscape version in English, or follow the links for versions in Italian, Spanish, and German:
Seeking the patient perspective: Living with LHON
Hello there
The results of the forums have been published in two reports (see links below). They captured the key discussions and provided people living with LHON the important opportunity to connect on critical issues, share experiences and make recommendations.
LHON webinar – Save the date!
Theme: LHON & Gene Therapy: Where are we now?
Save the date for a free, interactive webinar discussing gene therapy and LHON.
Hear the latest from companies developing gene therapies for LHON, clinical experts and someone who has been part of a gene therapy clinical trial. And find out what you can do to ensure the voice of people living with LHON is heard!
Our webinar will be on 19 September 2024 from 13:00 – 15:00 CEST. To register your interest click on the link below.
La Storia di Sara
Sara è giovane, ha 26 anni e vive a Padova insieme alla famiglia: i genitori e la sorella più piccola. Ha un’autonomia limitata nel camminare o nel fare qualsiasi attività fisica a causa di una malattia mitocondriale che la rende intollerante allo sforzo.
La Storia di Marzia
Tutto è iniziato il 17 dicembre del 2011, quando sono stata ricoverata d’urgenza per un’emergenza grave, il disseccamento della carotide. Sono stata in ospedale per tre mesi senza che però sia emerso il sospetto della mia malattia.
La Storia di Margherita – Margherita’s Story
Margherita, 42 anni, ragioniera, lavorava in un negozio di arredamenti industriali. Ha smesso quando è arrivato Peppone, suo figlio, che lei racconta così: Peppone è bello come il sole, è pacioccoso.