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Hi, my name is Limjahey. I'm here because
Hi, my name is Limjahey. I'm here because
Living with a rare condition doesn’t mean life stops — it just means life looks different. At 29, this software engineer is building a career, traveling the world, getting married, and giving back — all while living with spinal muscular atrophy. In this powerful personal story, he shares how planning, consistency, and advocating for himself have helped him shape a life on his own terms.
👉 Read his story: What Adulthood with SMA Has Really Looked Like: One Patient’s Story and learn about the importance of advocating for personal health.
Sponsored by Genentech.
Today’s #monstermonday #tradingcard is #caticshock ! Spine issues from #Arthritis , #autoimmunedisease , #SpinalMuscularAtrophy , and other conditions can contribute to #neuropathy impacting dexterity, mobility, and more. Have you collected #neuropathy ? Tell us about it!
Want to take an Advocacy Master Class? Check out Patients Rising! Their masterclass is the bomb!
I've been going through multiple situations over the past 30 days. #1 My eldest daughter got arrested at a public facility, #2 the year anniversary of my middle daughter's death quickly approaches, #3 Mother's Day is when my mother transitioned, #4 fighting for my life with these UNPROFESSIONAL MEDICAL CARE TEAMS, #5 I have 3 grandboys from my deceased daughter that are in foster care and they refuse family communications. There's so much more, but this is THE TOP 5 STRESSES.
THIS EMOTIONAL ROLLERCOASTER HAVE MANY OBSTACLES!!!
#Fighting4MyLife
Hi, my name is Supercrip. I'm here because I have come to a dead end trying to access help with my malformation of the spinal cord C6-T3. I have spastic diplegia and muscle wastage in legs and arms, particularly hands. I have Horner’s syndrome and autonomic dysreflexia. Spinal cord units in NSW, Australia will only accept people with spinal injuries caused from trauma not congenital.
Burnt-out from the ignorance that comes from the mouths of so called trained medical professionals whom attended society's schools to acquire a stamp of approval that they specialize in whatever 🙄 and obtained A DEGREE.
#Allergies #SpinalMuscularAtrophy #Anxiety #GastroesophagealRefluxDisease #SpinalStenosis #ChronicFatigueSyndrome #BrainInjury #MentalHealth #CardiovascularDisease #RheumatoidArthritis #Osteoporosis #Peripheral #InflammatoryBowelDiseaseIBD #InflammatoryArthritis #CrohnsDisease