A few things @Wings.
Myself and axolotl have said it before, but I think it’s worth saying again. If you do give into this, no-one here would judge you or think differently of you because of it. This disease is a fucking nightmare and many good people have taken their lives as a result.
However, we personally believe all of our lives are worth far more than that. If we give in now, what we say is that we’re content leaving the situation as it is, that we’ll not be remembered correctly, and that we’ll collectively die in an obscure corner of the internet. This disease will continue to exist, and we will not.
Secondly, there is other hope other than the Mayo Clinic, who I’m sorry to say will also not be able to treat PFS. We now know what PFS is after the release of Baylor - AR overexpression - and sadly the Mayo Clinic will not be able to treat it effectively. Our group is working as fast as we can to organise research into the condition and we hope to have an announcement soon regarding new research that will follow on from Baylor’s findings. $40,000 is a lot in these early stages of research, and it would go a long way to accelerating the speed at which we collectively find answers, and hopefully, treatments.
We are genuine when we say that if we collectively accept this condition for what it is - currently untreatable - and the resources we’ve poured into self-experimentation or treatments with very low success rates go towards targeted research that builds off Baylor’s findings, which confirmed Axo and Awor’s hypothesis, we will accelerate our understanding and find effective treatments much sooner. It’s your choice, always, but I’m personally disheartened every time I see patients spending large sums feeding clinicians who have little to no idea what PFS is, and with extremely sporadic success.
Lastly, I understand how you feel regarding your age. I got PFS when I was 22, almost 23, and it’s taken most of my 20’s from me. It will most likely take my early 30’s as well. But I have adjusted my expectations on life as a result, and I’m confident there will be a treatment for me in a timeframe that means I can still enjoy 40+ years of a happy, healthy life on the other side. That’s a long time. If you’re 27, that possibility exists for you too.
It’s unacceptable that we’re in this situation, but please think about what I’ve said. And if you’re willing to spend that much on the Mayo Clinic and are interested in our research projects, please reach out and I’d be happy to have a call to discuss in further detail.
Take care man.