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
Aaron Rodriguez+FollowSMA Treatments Help Keep Hands MovingJust learned that Spinraza and Evrysdi can actually help kids and young adults with SMA type 2 keep their upper limb strength for longer! The study found that without treatment, arm function peaks around age 4 and then drops off, but with these meds, the decline is way slower. Earlier treatment might mean even better results. For anyone with SMA or caring for someone who is, this could be a game-changer for independence and daily life! #SMAAwareness #Spinraza #Evrysdi #RareDisease #MedicalBreakthrough #Health40Share
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
Joseph Bradley+FollowFDA Delays Are Hurting Kids Like My DaughterImagine watching your child lose the ability to talk, walk, or even eat—knowing there’s a treatment out there, but the FDA keeps saying no. That’s the reality for families fighting rare diseases like Sanfilippo syndrome. Despite promising results, the FDA’s slow approvals mean kids are running out of time. My daughter finally got an experimental therapy after years of waiting, but what if she’d gotten it sooner? Families, doctors, and advocates are begging the FDA to speed things up—because every day matters. #Health #BodyHealth #RareDisease222Share
