OMG. It’s a Friday afternoon and as I’m sitting here, my heart is breaking for people with neuromyelitis optica, a very rare disease that use to be considered a rare and more severe form of multiple sclerosis (MS).
The good news is that scientists have now determined that NMO is NOT a form of MS, but rather is another rare demyelinating disease.
In demyelinating diseases, the outer shaft or what’s also known as the protective coating of the nerves in our bodies, is destroyed which exposes and essentially also destroys the nerve and leads to disability. Like MS, NMO is an auto-immune disease.
But what’s also disturbing to me is, I never dreamed that it could attack children! Yes. Children. I guess, come to think of it, MS is on occasion, found in children as well, but that’s still rare.
I watched a video produced by the Children’s Hospital in Philadelphia that features an interview of a doctor, I’m assuming a neurologist, who is an expert in diagnosing pediatric cases of NMO.
If you’d like to watch it, click HERE.
She’s rather straight and to the point, definitely not a warm and fuzzy type, but by God, she knows her stuff. And in her own clinical way, extends care and compassion.
I don’t know the number of cases of kids being diagnosed with NMO but I can say that it must be gut-wrenching for parents to receive this news because no one expects this to happen.
The BEST bit of advice she gave for parents:
- Do not blame yourself – there’s nothing you could have done to prevent it.
- Start treatment early and try to raise your child as best you can to prepare for adulthood. It’s important for these kids to feel like their lives matter.