“In the pipeline” means something pretty special for people living with rare diseases that have no cure, such as neuromyelitis optica (NMO or Devic disease).
Far from the divisive protests surrounding oil piplelines, in our world “in the pipeline” is synonymous with hope.
That’s especially true when your disease has really had no “official” treatment. Doctors do the best they can, trying drugs and other treatments that have shown promising results with similar diseases (or “off label”).
When no research is specifically crafted to address the unique requirements of YOUR disease, it can feel demotivating at best. It’s probably more accurate, however, to call it demoralizing.
So it’s GREAT news when you hear that your disease is finally getting some attention.
That’s why if you or someone you care about has NMO, you’ll want to know about this YouTube video discussing new treatments.
According to Maureen A. Mealy, RN, BSN, MSCN, at Johns-Hopkins Medicine, who is featured in the video, there are three clinical trials for NMO!
More Reasons to Watch
The 6:09 minute video is also a general review/update about NMO. It discusses the fact that it’s considered an “ultra-rare” disease and what treatments are available off-label.
Overall, it’s a great educational review for anyone who wants to feel well-informed about what’s going on in the world of Devic’s disease.
One important take-away is that even though there’s a very easy and specific test for NMO, it still has a 30-40% false positive rate. To me, that means asking to be tested at least 3 times isn’t unreasonable. After all, this is a devastating disease. The consequences far outweigh the pushback I might get from any healthcare team.