This is the BEST SITE in the word !!!! Thanks Epoman

[Razman]

   Today I finally understood why Epoman started this site.  There is no dumb manager watching and removing posts.  I posted an article on anthoer medical forum. It was taken from  the Journal of Medicine and a Detroit nephrologist had posted it on his blog.  The doctor managing the site said that the study was too old and he removed it !!!   I don't think that he even looked into it and the doctor in Detroit felt that it was worth while.   

This is the  BEST  site in the world!  People can share their view points without someone else being the judge. They can also share their smiles and their sorrows and get real support.     Thanks Epoman

[Rerun]

This should really be under "SITE Comments" but I don't have the heart to move it because I agree with you Raz!

Just don't use the "D" word under off topic! 

                           

Rerun, Moderator

[Razman]

  Thanks Rerun, I just had to tell everyone.   I am sure that others will agree.

[paris]

Nice post, Razman.  I think Epoman ran into the same problem you did and thank goodness, he created this site.  I still am amazed at how much detail and thought he put into IHD.  Thank you      

[looneytunes]

I agree Razman.  Having cruised other sites, this is by far the best! 

[Stoday]

When I browsed around for a d****** site (note excision of banned word  ) I tried one based in England.

This is far better and the international mix of members makes it a world beater. 

[Zach]

 

[kristina]

I agree. I have tried different European Internet-Lupus/kidney-forum’s & they appear like grim entertainments: amusing the “down and outs” with the catastrophic predicaments of the more severe “down and outs”.

In an effort to find a NHS-GP/specialist/nephrologist in my ESRF I have tried, for example, a British kidney-patient-forum & was very shocked to learn that it was a NHS-forum & my situation was misused to entertain and to have fun with, a direct continuation of the psychological abuse conducted by NHS-doctors I have met in the past: no feeling, no compassion and no humanity.

One kidney-patient-NHS-spokesman seemed very sympathetic. I trusted to give him my phone number, to find, that all he really wanted was to have more fun with my situation. I was unable to understand his slurry speech & there was a screaming radio/television-noise in his background. I feel, he was not even interested to try and understand what I tried to communicate and the whole exercise came as a terrible shock and disappointment.

Furthermore, the same NHS-kidney-patient-spokesman then sent me a copy of an e-mail from a NHS-nurse who informed him “she certainly knew how to deal with difficult NHS-patients” and she seemed very keen to get her hands on me. I would not even think of giving her such a chance.

Even if I had a chance to see a NHS-GP/specialist in my ESRF, the time they usually allocate to NHS-patients is only about 7 ½ minutes per NHS-appointment. With a systemic complicated disease like my Lupus causing my ESRF, 7 ½ minutes is certainly not enough time for a doctor to approach a medical problem like my ESRF. In fact, I believe, the little time allocation of 7 ½ minutes per appointment is why I never had any NHS-medical help when I was in urgent need of it.

What’s left in my situation is to study and learn as much as possible from other patients in ESRF, exchange our knowledge, help each other and hope for the best.
With a site like IHD I feel I have a chance to learn and study from other ESRF-patients, compare, add, leave out, learn more about diet, more about what to avoid, etc and that takes away some of the devastating stress of my situation in ESRF without a doctor to go to. It gives me a feeling that I might be in with a chance despite everything.

I believe I have been able to learn from other IHD-members and I do hope IHD continues with the humanitarian ideas of Epoman in mind. I feel, Bill Halcomb also went through a lot and that is why he set up IHD as it is because of his own experiences.

Thanks, Kristina.