We are always hopeful new drugs will be found that can take us closer to effective treatments and ultimately a cure. IMP is incredibly disappointed to learn that Reneo Pharmaceuticals has terminated its Phase III Stride trial
Setting up a patient led organisation can be daunting. With so much to think about, from governance to marketing, it can feel overwhelming. We want to support our members and those thinking about setting up new mito patient organisations by sharing all that we’ve learnt.
I had never heard of mitochondrial disease until 3 years ago. My journey started when my mother experienced a rapid decline in health, losing muscle in most parts of her body and struggling to breathe. Her, my older brother and I all experienced hearing loss at a young age
Maddie’s journey began in 2011. Her mother, Sara, quit her job to stay at home to take care of their new baby. Sara could tell something wasn’t quite right with her daughter. Being with Maddie all day allowed Sara to track Maddie’s changes, but she couldn’t put her finger on what was wrong
Garry Kruger didn’t understand what was happening, but he does remember that his symptoms started in 1999. He was experiencing leg and foot pain, lower back pain and he noticed that his eyelids appeared to be drooping
Joe was looking toward a bright future. While in high school, he remembers that life revolved around hanging out with friends and playing sports. Joe was at the top of his class in academics, was on his varsity soccer team and was the captain of his robotics team. It was in the robotics lab at school when Joe realized something just wasn’t right with his vision.
Ons jongste zoontje, Marco, heeft een motorische en mentale handicap ten gevolge van een stofwisselingsziekte. Toen ik dit verdict voor het eerst te horen kreeg dacht ik dat ik nooit nog zou kunnen lachen, nooit meer echt gelukkig kon zijn.
When I was 20, I my left eyelid started to droop. This was my first symptom of mitochondrial disease (mito), but it took 17 years for me to receive a diagnosis
Onze zoon, Bert, is geboren op 21 december 1986. Bij Bert waren er al van bij de geboorte kleine problemen. De voornaamste waren: veelvuldig braken, zijn voeding niet verdragen, in april 1987 buisjes in beide oren, in mei SIDS-registratie: die gestoord was, in oktober 1987 opname in Leuven: dit wegens een Hemophilus influenza sepsis, in januari 1988 is er een verminderde immuniteit vastgesteld nl: de fagocytose en tevens een vrij laag IgG voor de aantal doorgemaakte infecties
Wieland Rödel leidet an einer seltenen Erkrankung der Muskelzellen / Selbsthiflegruppe für Betroffene