While I very personally understand the frustration that many do not realise the enormous variability of patient conditions and the fragility of those most seriously affected, I think @orthogs comment is very important irrespective of that. It is a philosophical battle I had myself as I suffer profoundly without a quality of life. I am not in a stable condition and I accept what may happen. However, as long as I’m able I’ll do my best. There’s a reason so many great stories surround issues of struggle and self-sacrifice: It is a well appreciated virtue. This is an atrocity and an injustice. It needs to be addressed properly. What you are describing, what I am experiencing, is serious. PFS has claimed the lives of far too many good people already. I have read their accounts, read many letters from and spoken to family members. We all have the responsibility to do our best for us and them, because at this stage if we don’t, no one will.
You do, and that is the spirit I and others want to see . If the only way you can help is enduring, focus on any way to do that. Shouting about how people should pay for what they’ve done to you will help about as much as the hundredth alternative health cure. We need consistent and considered progress so we can ultimately help everyone, especially those suffering the most, and protect others from what is a public health issue with profound implications. The evidence of what has happened to you is you @demon, as it is with @Rb26dett. We have a lot of patients clear that finasteride caused their condition but currently you two are the only patients of your respective substances, and as @awor has said clearly for years we know this is happening through a common demonstrable vector in those predisposed. You are both very important to this issue, and important as people. It doesn’t matter what someone thinks - patients here or elsewhere, family members trying to make sense of what they can see, clinicians unaware of the condition, researchers with a narrow theory - it only matters what is truly happening. Please focus on your inherent worth and find a way to be brave. As @orthogs said, you have the potential to do good. For me at least, this helps me endure whereas selfishly I would not. It gives me strength and purpose that helps me achieve things through immense adversity. How common is it to have such an important task as us? As Dickens wrote, it is a far, far better thing I do than I have ever done. And if I run out of road, then I do hope the next line about rest applies. As is true of all people, all we can do is choose what we do with the time we have.