Joseph Bradley+FollowThis Teen Can’t Eat ANY Food?!Imagine being allergic to literally every food out there. That’s Finley’s reality—his body treats all food like a virus and even bleeds internally if he tries to eat. Doctors are totally stumped and haven’t found anyone else like him. He gets all his nutrients through tubes straight to his heart and stomach, and the condition is so rare, it doesn’t even have a name (he calls it 'Finley-itis'). Wild, right? #RareDisease #MedicalMystery #Unbelievable #Health150Share
Jason Weaver+FollowDid You Know Newborn Screening Isn’t Equal?Imagine being told your newborn isn’t worth screening because of a rare diagnosis. That’s what happened to Sarita Edwards, whose son Elijah was denied basic tests due to his life expectancy. Turns out, newborn screening isn’t as universal as we think—and privacy issues make it even messier. A new report is calling for clear rules and more transparency so families actually know what’s happening with their baby’s genetic info. Early diagnosis can change lives, but only if everyone gets the chance! #NewbornScreening #HealthEquity #PrivacyMatters #RareDisease #Parenting #Health01Share
Misty Brady+Follow26 Docs, 37 Procedures, 1 Shocking DiagnosisImagine seeing 26 doctors and going through 37 procedures, only to be told no one knows what’s wrong with you. That was Nika Beamon’s life for 17 years—until a single blood test finally revealed she had a rare immune disorder, IgG4-RD. Turns out, if you catch it early, you can live a normal life! Her story is wild proof that you should never stop fighting for answers when it comes to your health. Always trust your gut! #MedicalMystery #PatientAdvocacy #RareDisease #HealthJourney #NeverGiveUp #Health50Share
Aaron Rodriguez+FollowGame-Changer for Rare Swelling DisorderBig news for anyone dealing with hereditary angioedema (HAE): the FDA just approved Andembry, a once-a-month shot that actually prevents those scary swelling attacks before they start. It’s the first drug to target the real culprit (factor 12) and people in trials had way fewer attacks—like less than one a month! Plus, it’s got fewer side effects than older treatments. If you or someone you know struggles with HAE, this could be a total life upgrade. #HAE #RareDisease #FDAApproved #Health #BodyHealth30Share
rachel60+FollowBaby’s Life Saved by Custom Gene TherapyA baby born with a super rare, deadly disorder just became the first person ever to get a one-of-a-kind, personalized gene therapy—and it’s working! KJ Muldoon was facing a future of strict diets, risky transplants, and scary odds, but thanks to a CRISPR-based treatment made just for him, he’s now thriving and hitting milestones. Even when he got sick (which usually means disaster for kids like him), he bounced back like a champ. This could totally change the game for rare diseases! #GeneTherapy #MedicalBreakthrough #CRISPR #RareDisease #ScienceNews #Health190Share
Mr. Roy Ewing II+FollowGene Editing Just Saved This Baby’s LifeA one-in-a-million baby, KJ Muldoon, was born with a rare genetic disorder that could’ve been deadly. But thanks to a custom CRISPR gene editing treatment made just for him, he’s now thriving! Instead of a risky liver transplant, doctors used a new “base editing” technique to fix his DNA. He’s hitting milestones his family never thought possible. It’s early days, but this could totally change the game for rare diseases! #GeneEditing #CRISPR #MedicalBreakthrough #RareDisease #ScienceNews #Health891Share
Aaron Rodriguez+FollowRare Cancer Drug Gets Fast Track NodBig news for anyone following cancer breakthroughs: the FDA just gave Fast Track status to givinostat, a potential game-changer for people with polycythemia vera (PV), a rare blood cancer with few treatment options. This means the drug could reach patients faster if trials go well. Givinostat targets the root cause of PV and could help control symptoms and lower the risk of serious complications. Fingers crossed for the Phase III trial! #CancerResearch #FDA #RareDisease #MedicalBreakthrough #PolycythemiaVera #Health2325Share
Michael Flores+FollowNew Molecule Could Change Rare Disease GameScientists just found a single molecule that might actually reverse the effects of rare, devastating genetic diseases caused by POLG mutations. This is huge—these conditions are tough to treat and can show up at any age. The new compound, PZL-A, basically helps the cell’s powerhouses (mitochondria) fix themselves, even when their DNA is messed up. Early lab results are super promising, and clinical trials are already underway. Could this be the breakthrough so many have been waiting for? #ScienceNews #MedicalBreakthrough #Genetics #RareDisease #HealthInnovation #Science90Share
Ashley Johnson+FollowWhy DM Patients Pay Way More for HealthcareJust learned that people with myotonic dystrophy (DM) in the US are hit with way higher healthcare bills than others—like, $32k a year! They’re more likely to end up in the ER or hospital, especially right after diagnosis. The wild part? It often takes YEARS to get diagnosed because symptoms are all over the place. If doctors caught it earlier, costs (and stress) could drop big time. Makes you wonder how many folks are out there struggling without answers. #HealthCosts #MyotonicDystrophy #RareDisease #Healthcare #MedicalAwareness #Health171Share
shermandarlene+FollowBlood Test Clues Before Symptoms? Wild!Scientists just found that a blood protein called GFAP is higher in people with hereditary transthyretin amyloidosis (ATTRv)—even before they show symptoms! Another marker, NfL, only goes up once symptoms start. Basically, a simple blood test could help spot this rare nerve disease way earlier than we thought. Oh, and women naturally have more GFAP, so that’s gotta be factored in. Medical mysteries, am I right? #MedicalNews #RareDisease #ScienceUpdate #Biomarkers #HealthDiscovery #Health171Share
