9 months Chinese PFS suffer's story, do I have chance to recover from this hell?

Member Stories
#63

I pray that you along with everybody else here finds healing.

I myself am a very severe case and the only thing I cling onto is hope that the mechanism of action is discovered and PFS becomes a medically recognized disease so we can focus on finding treatments and a cure.

Your story intrigues me because of the approach your doctors and research teams took. I am a big believer in the cure coming from an application such as CRISPR. I have heard China is experimenting with CRISPR and may be willing to try controversial approaches that the western world wouldn’t consider. I hope that the your doctors continue to take a keen interest in your case as well as the cases of the 20+ other Chinese suffers you mentioned. Where do things currently stand with your doctors?

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#64

@Hanru_Sun have your doctors analyzed the results of the baylor study and given their opinion?

#65

Hi, I will try my best to answer your question.
Right now my doctor’s study are still in process, another Chinese PFS suffer has came to Beijing and finished sampling, but to reach a more common and liable conclusion, we may need more patients to participate in, unfortunately, most of the 20+ PFS suffers I am keep contacting with, they are not in a wealthy family and many of them are very young and just start working, which means they cann’t afford the expense on traveling and accommodating in Beijing and seeking medical advises in the best hospital in China.
I don’t think that gene editing therapy will be viable recently, in China, we indeed have the first gene editing baby, a doctor eliminated a gene segment on her so that she won’t infected by HIV in her whole life, but this doctor do this by ignoring medical supervision, as a result he was put in to jail for 3 years, which means gene editing on human are still illegal in China, and there are so many ethical controversy and so many we don’t understand at all in this area.
For me i believe nature recovery with some medical assist is still the only way right now, even my doctor has done so many research, he is still using the traditional method to treat me, HRT to fix my hormone level, PDE5 to treat ED and bupropion to treat my severe anxiety and depression, and hoping my body can readjust as time pass by, that is all the help that modern medical could offer right now. so the only advice that I could give to you is trust your body can recover as time goes by, just like those recovery stories on this forum.

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#66

Thank you for your response.

Please keep us updated on your progress and with anything your doctors discover.

I wish you the best in your recovery.

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#67

Thanks, best wishes for you, too.

#68

There is a chinese subforum here, cluck the black link Chinese forum to get there.

And they can use the google translator. It would be interesting to all of us to hear their story too and our community will rise.

@Hanru_Sun A good time in Auckland!

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#69

Hey Hanru_Sun, is there a chance you know some other PFS sufferers which can do this gene mutation test? So we could see which gene mutations you have in common with other pfs sufferers

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#70

Hi, another 3 PFS suffers in China have already done that test, we need more samples to reach a common and accountable conclusion.

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#71

Hi, Im in beijing and already recovered 80%. I am willing to take a test. How could I reach out?

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#72

What exactly is this test, is it a tissue specific epigentics test like the Baylor study to show upregulation/ downregulation of genes. Or something different.

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#73

Today, my mother had a dialogue with sun Hanru’s attending doctor (also a rare PFS doctor in China).
He said that they would soon have new research results. He said that let me believe that this can be cured. Let me believe that China’s own scientists will cure us all soon. He must cure us completely.
“We are racing against time to do research”, he ran to study after seeing my mother. He should not work today, but came specifically for my condition.
My mother said, “he sees that your mental outlook is much better than last time. He is happy and always smiles like a child.”
The doctor said that he can only fall asleep after taking sleeping pills (I guess it’s because he tried to take finasteride himself for study). He slept after 1 o’clock and got up on 5 o’clock. He has been working all the time.But he said that now he only wants to do research and experiments. If he can’t sleep, he will do more.
"I want to work with the team to speed up, let the children suffer less pain, and make you better."he said.He told me to work hard and actively. Then he ran to study.
I cried. What a fucking mess I’ve been in! He is sixty years old.

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#74

Long live CHİNA!!! KEEP US POSTED!!!

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#75

What a HERO!! Yes, please keep us all posted, rooting for you my brother!!

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#77

I believe that if there is good news, my good brother Hanru will release it at the first time. :joy::joy:However, given that Chinese doctors know so little about PFS, I don’t expect them to come up with decisive articles in the short term

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#78

What the fuck? He took finasteride himself to study PFS? Holy shit if that’s true. Most amazing doctor I’ve ever heard of. Pure dragon energy. :cn: Keep fighting, never give up. 起来!

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#80

It’s true that he has serious insomnia. He “runs” to study - this is what my mother described to me，Because he once prescribed finasteride to others, thank Hanru for finding such a doctor for us…

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#81

So did you try stopping gluten?

#82

many thanks to @Hanru_Sun, I will try my best to revocer from this nightmare

#83

How is going with Chinese doctor? Maybe we can give him some of our data if he gonna need.

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#84

I don’t feel optimistic. Instead of starting with androgen receptors, they chose gene sequencing. They have completed three groups of gene sequencing. The relevant data are still being analyzed. They will choose full exon sequencing for the other three samples. Interestingly, a Chinese rehabilitative patient is also involved.
if you have any data，please show with us，we will send it to them.:blush: