Month: August 2020

MS Reclamation

Communication Rant

There are loads of articles that explore this subject, but I think people are missing some elements. Talking about what NOT to say, how to say X.

What People SHOULD Say to Someone Living with Multiple Sclerosis
How to Be a Friend to a Person With MS

I don’t think these are wrong,  especially not from the place the narrative is coming from, but I think it’s important to remember maintaining a relationship relies on both people involved.

I saw read a story from a well-intending friend of a PwMS, who is struggling with ideas on how to offer their support – without seeming condescending or reminding their friend that they’re ill.  Attempts to console their friend were rebuffed, friend expressing that the well-wisher can’t relate to their experience.

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MS Reclamation

Ocrelizumab and COVID-19

Guidance for PwMS from their neurologists seems to have been “carry on per usual” with COVID guidance, which for a lot of folks seems to mean to do them as they normally would, which I completely understand the want for, but please, stay aware and cautious out there.  I’m seeing so much misinformation about the Anti-CD20 monoclonal antibodies (mAbs). Predominantly: neurologists telling their patients there isn’t cause for exceptional caution with any DMT. With a couple of therapies though, this might not be precisely accurate.

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MS Reclamation

Multiple Sclerosis Within Black Demographics

Per the Mayo Clinic, “Risk Factors” for MS include:

White people, particularly those of Northern European descent, are at highest risk of developing MS. People of Asian, African or Native American descent have the lowest risk.

Let me go off script a moment and be blunt here. WE KNOW THIS IS FALSE. If that looks like I’m shouting, not sorry: I am. I’m angry and heartbroken. This is where I end up every time I think about it. I’ll try to be civil for the sake of providing useful information and spreading awareness, but this is injustice.

In an article titled “Multiple Sclerosis More Common In Black Women Than White” on Medical News Today:

“Of these new cases, black patients had a 47% greater likelihood of MS compared to white patients. Results also showed that Hispanics had a 50% reduced risk compared to white patients, and Asians had a 80% lower chance than whites.”

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