On May 7, 2023, Kimberly Kotar completed a half-marathon. That’s impressive in its own right—only more so when you learn that, due to her transverse myelitis, Kotar was once unable…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a recent article in MedicalXpress, researchers at Houston Methodist have reported acute transverse myelitis (ATM) in forty-three COVID-19 patients across twenty-one countries. Spinal cord lesions developed in these…
Currently, there are a number of vaccines for COVID-19 that are being investigated, one of which is AZD1222. The trial was paused back in September when a participant became ill…
According to MedScape, tumor necrosis factor (TNF) inhibitors present severe issues for patients with autoimmune disorders. In particular, patients exposed to TNF inhibitors may experience inflammation throughout their central nervous…
According to a story from BusinessWire, the drug developer Alexion Pharmaceuticals, Inc., recently announced positive results for its Phase 3 trial testing Soliris as a therapy for neuromyelitis optica spectrum…
The United States Food and Drug Administration has awarded Orphan Drug Designation to Q-Cells®, a product being developed by Q Therapeutics, for the treatment of transverse myelitis. For more detailed…
According to a story from tdn.com, Victoria Arlen recently discussed her past experiences with transverse myelitis and acute disseminated encephalomyelitis, which left her in a coma-like state for years. You…
Virginia Ventura, 25, woke up one morning when she was 6, and found she was unable to move her legs. There had been no warning signs that she remembered, but…
Amanda McGrory's teammates nicknamed her work out "The Stairway to Hell." Depending on how you feel about intense work outs, that could make you want to run away screaming, or…
Pauline Siegel was 35-years-old when she was unexpectedly struck with a rare disease that would render her disabled from the waist down. The diagnosis took several painful days to finally…
One night in March 2016,13-year-old Treyvon Summers experienced extreme pain that woke him up out his sleep. This was the start of him losing his mobility in both his legs.…
We’ve all played hooky once or twice, right? Even your parents have played hooky before. That’s why they were so skeptical of you when you were doing it. But Michelle…
Fifteen is such an awkward age. Your body is growing; you might not have gotten past the clumsy, gawky, gangly stage yet. You’ve started to look at the opposite gender…
Oh the joys of a 17-month-old toddler… I remember some of the typical behaviors of those days—the throwing heaving of everything and anything, the opening of the fridge a million…
The spinal cord is a major part of the central nervous system, and when it becomes inflamed, transverse myelitis results. It often causes a band-like sensation across the trunk of…
On October 20th and 21st, the 2017 Rare Neuro-Immune Disorders Symposium (RNDS) will be held in Columbus, Ohio. The event is meant to bring together patients, families, researchers, and all…
Hannah Hawkins has an autoimmune disorder called transverse myelitis. She has to go to physical therapy multiple times each week to help her walk. Using a crutch is the norm…
The Transverse Myelitis Association is a nonprofit founded by individuals whose passion for advocating for the disorder is deep-seated. All five of the families who have worked to establish it…
Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using fear to serve you in…
Kyrus Rogers a former security guard was supposedly misdiagnosed when an emergency room physician apparently failed to run diagnostics for transverse myelitis (TM). Rogers, once a healthy, athletic 30-something, is…
A short list of abilities that we take for granted: going shopping playing basketball sitting up in a chair walking to the restroom when the urge strikes reaching out and grabbing…
What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…
It was an ordinary day for 8th grade student Landon Severson. He was just starting the new school year and went to marching band practice. However, his day changed when…
If you or your loved one suspect you may have transverse myelitis (TM) you need to get to a doctor right away. TM is a serious neurological condition that requires…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
