Dumb it Down...
Weird title… right? Well it’s not in regards to anyone with MS, so let me just clarify that so no one gets mad at me…
So whom am I telling to dumb it down? All these companies/website who produce News Articles about Multiple Sclerosis Now don’t get me wrong – I really enjoy reading up about what’s going on in the World of MS… and as MS patients; we are known to be highly educated in our illness. But it can be really difficult at times to read the articles that are published.
For one, not all patients know what the scientific name is of each MS medication on the market. I can understand that a lot of these publications are written for medical professionals to view, but what about the patient?
(Now I’m not saying that EVERY website that makes these articles are like this, but there are a lot of them.)
I just feel as MS patients that we should be the audience that these publications are being written for, not for medical professionals. Or it would be nice to have at least a scientific version and then a…. Plain English version? << aka not so much medical mumbo jumbo.
It’s already hard for some of us to view things on the computer or navigate a computer due to spasticity, optic neuritis, etc. So why not just have what we NEED to know in easy to understand terms, right in front of us? And if we do want to know a more ‘scientific’ and/or in-depth publication, link it to the article that is full of mumbo jumbo.
We are already secluded as it is, living with MS everyday and having to adjust our lifestyle in order to live the best we can with MS, why should we have to do MORE to learn about a medication in trials, a recently approved medication, a study on a symptomatic treatment… Hello! We are going to end up being the consumer of the things that are written about, so some plain English information would be great!
For instance… “[MS Medication] is a monoclonal antibody that targets the T Cells. “ Okay… what did that even mean? What’s a T Cell? What’s a B Cell? What’s a Mono-whatever antibody? How does this correlate with MS?
It feels like I need to go to medical school just to know what these articles even mean… I do a lot of googling, and that doesn’t even help out all the time or give a better explanation.
For instance… Monoclonal antibodies mimic the antibodies your body naturally produces as part of your immune system's response to germs, vaccines and other invaders. (Source: MayoClinic)
T-Cells… did you know that there is more than ‘one’ type? So basically, T-Cells are the cells that affect our immune response. They are also the cells that get past our “blood-brain barrier, and attack our nerves
B-Cells… they are the ‘bands’ that doctors look for when you receive a spinal tap/lumbar puncture.
Man, I feel like I should make a dictionary for MS patients. There are just things that could be said in a much easier, understandable way.
And I don’t know about anyone else, but I love graphics/videos; as long as it is easily understandable with verbiage.
So what we really need is a dictionary/picture book. Haha
But seriously… am I the only one who feels this way? Because I feel like I know a lot about MS and it’s terminology… but I don’t always ‘remember’ the information. It just seems easier for me to retain information that isn’t difficult language.
It’s kind of like music…. I remember lyrics to songs from years ago, but I don’t remember all the definitions and information I learned years ago at school. I mean, I can sing the intro song to Fresh Prince of Bel Air… but I don’t remember what war started when… is that bad? Oh well, its society… and cognitive issues.
Do you find it difficult to read news articles/publications about MS?
How do you feel before getting an MRI done?