Rarest disorder of all time?

General Discussion
#1

I was just thinking today that we might be the rarest medical case in the history of mankind. Even the rarest disease, when multiplied by the enormous number of people that have lived on this planet, has likely had more sufferers than PFS. Only a handful of people in the history of humanity can understand what we are going through…

We need to remember this and stick together - and we need to work TOGETHER to get this cured. It sucks - but all we have is each other. I’m sorry for the sappiness - but hang in there, it does get better, and we ARE a brotherhood!!

#2

en.wikipedia.org/wiki/Progeria

1 in 8 million chance of being born with it.

#3

Nobody is born with PFS, it’s man made by Merck

#4

Very true but PFS isn’t the rarest disease. Actually the less rare it is, the better for those of us with it. If there is even a 0.2% chance of getting PFS in any form, it just isn’t worth it to take it; especially for hair loss. Russian Roulette with a revolver with maybe 500 cylinders.

#5

Russian Roulette is more humane since it kills you. This makes you suffer.

#6

That’s my point. Estimates are that around 107 billion humans have ever lived. At the rate of 1 case in 8 million, over 13,000 people in history would know what Progeria is like. Our numbers our much smaller…again, I think we may have the rarest condition of ALL time…

#7

I don t think adverse drug reactions are that rare and that is exactly what this is. Pfs is still outside the definition of recognised medicine so we are presently all suffering from an adverse drug reaction/withdrawal syndrone. Pretty non_specific but that’s the diagnosis I got.

I d imagine that globally there have been 10 s of thousands of adverse drug reactions with similar symptom profile to our own.

Ssri
Flourochinolone antibiotics
Accutane
Benzos

All have distinguished post marketing adverse effects. Drugs that have been prescribes to 100s of millions.