Rare Disease PSP, MSA, CBD

Do you think PSP/MSA/CBD are as rare as they say?

By: Laura Louizos

The diagnosis is only a clinical diagnosis. The only way to officially confirm PSP, MSA or CBD is an autopsy. (This is why Brain donation is so crucial to help better understand these diseases!)

The reason for this is that the part of the brain that is able to identify these diseases is not able to be accessed safely. They are working on other biomarkers and hope to soon be able to better diagnosis and in the earlier stages of these diseases. Now with that said, there are some tell tale symptoms that if the doctors are familiar with these diseases, they can look for...but unfortunately there is not a lot of awareness and knowledge outside of who are affected by them.

They are often misdiagnosed with Vertigo, Parkinson’s, ALS, Alzheimer’s, Stroke...and so many other diseases that they share similar symptoms with.

Unfortunately PSP/MSA/CBD do not have a good prognosis and they rapidly progress. It becomes 24/7 care required and because not many of the supports have heard or know about it, that leaves them isolated and to fend for themselves 😔

There are A LOT of things that can be done to help with the symptoms and improve quality of life...we just need to be able to connect with all those affected and help them! We can’t do anything about the disease and stop it-YET, but we can try and provide the best care along this journey 🙏 It’s a very tough one and so much more Support is needed!

In my opinion... I do not think these diseases are as rare as we think. Yes I agree they are rare but I won’t doubt if there are more than double what is projected out there, they are just misdiagnosed or passed without ever knowing.
Hopefully one day soon we will have answers! Sending Love and Strength!

What do you think? Comment below!

 

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2 comments

Yes I agree that it is not diagnosed at all or in a timely manner. So I do think it is prob not as rare as we think.

June LoRe

My mom was diagnosed relatively quickly thanks to a wonderful geriatrician. However, in hindsight, at that point, Mom was experiencing many of the symptoms – which made no sense until the diagnosis. My hope is that research will lead to something to halt the tangle of the Tau protein, that ended a beautiful life all too soon. We live on a small island – 4 cases that i’ve heard of, so not as rare as believed.

Joanne Harrison

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