Interview with Prof. Roberto Melcangi by Join Robb from PFS Foundation

General Discussion
#44

A slow deterioration is much more likely than a natural recovery for serious cases.

#45

They should be able to test new treatments on PFS patients who have nothing to lose instead of waiting for so called ethical approval which could take many years.

I cant imagine any other drug could do as much damage to the body as Finasteride.

Over the years Ive taken many different drugs and treatments which have not caused me any long lasting harm unlike Finasteride.

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#46

Youā€™ve recovered a good amount correct?

#47

pvdl, holyhead, I think both you are right.

On one hand, ā€œNatural recovery is a pipe dream for serious cases.ā€

On the other hand, ā€œall we can do is try to give the body time and what it needs to recover naturally best it can and support each other because the tech to intervene in such matters is not here yet basically.ā€

It is probably the conclusion we have reached from our many years of experience on this forum. It is the cruel reality. But we should not look away or escape from the reality.

Being a very serious case, I probably cannot live on. My insomnia is getting worse and worse. On the other hand, several Japanese patients I am in contact with had milder symptoms than I did, and after a few years, they have improved somewhat and returned to their daily lives.

It seems certain that our bodies have the ability to correct distortions to some extent over time. However, this ability is very weak, so improvements take a long time and are limited, and in severe cases, it seems to be relatively ineffective.

So, In a sense, the situation is simple. We have already been fundamentally destroyed, there is no room for medical treatment, and our remaining capacity for reconstruction is limited and weak. That is all.

#48

Iā€™ve recovered by over 70% but I still have problems.

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#49

Yes Iā€™m not saying you will recover with timeā€¦That is truly not the case for the majority of pfs sufferersā€¦As I myself after 10 years am only worsening with time and am in a truly perilous state of health now with no job after years of contributing to both organizations and participating in all the data sets and genetic studies i couldā€¦

Iā€™m just saying its the only option we haveā€¦

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#50

Thanks Mark. Over 70% recovery is great! I hope you will achieve 80% in near future.

I believe that sharing these realistic recovery stories is what is most valuable here.

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