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Author Topic: Ignorance  (Read 5180 times)

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Offline NYCHEPCMAN

  • Member
  • Posts: 63
Ignorance
« on: March 22, 2016, 11:11:20 am »
When I was first diagnosed with Hep C I was warned by a friend of mine who is  a nurse not to tell people because a lot of people are ignorant of Hep C. How right she was!

Someone who I didn't disclose to, sent me nasty text messages how happy people from a local watering hole are that I don't go there (I stopped drinking alcohol) since they don't want to catch Hep C from me drinking out of their glasses.  Now it was probably a good guess on her part why I stopped drinking but was painful that people who I was friendly with would say that. I am happy that my treatment is going well and that I was undetected at my week 4 blood test, is there anything we can do to educate people on Hep C? My mom who was a living saint got it from a blood transfusion but regardless of how any of us contracted it it still has such a stigma out there...... :-[


 
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline slats1056

  • Member
  • Posts: 740
  • SVR to all and to all a good life!
Re: Ignorance
« Reply #1 on: March 22, 2016, 11:39:11 am »
 Ignorance is curable! Stupidity is not! Ignorance is not knowing, Stupidity is not knowing You don't know.
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline lporterrn

  • Global Moderator
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  • Posts: 1,908
  • LucindaPorterRN
    • LucindaPorterRN
Re: Ignorance
« Reply #2 on: March 22, 2016, 05:09:13 pm »
Sickening. I just wrote about this in my blog, but your words speak volumes. So, so, sorry.
In case you are interested: https://www.hepmag.com/blog/stigma-hepatitis-c

As for what you can do, you can try to educate.
« Last Edit: March 22, 2016, 05:10:44 pm by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mugwump

  • Member
  • Posts: 726
  • My number of posts means nothing, piscor ergo sum!
Re: Ignorance
« Reply #3 on: April 23, 2016, 04:37:35 am »
The best way to deal with ignorance is with patient steadfast persistence. Shame the news media and useless politicians for starters especially the ones who are receiving add revenues and lobby money from the drug companies. It is time to climb all over them with twitter, faceplant, e-mail, youtube THE WORKS.


We have the power of the internet and we can make a difference especially for those who chose to stay in the closet and hide from the ignorance and intolerance that this disease has spread. Moreover the ignorance of how this disease became a problem in the first place and how wide spread it really is needs desperately to become public knowledge. Then perhaps the stigma can finally be overcome.


I have friends and relatives who are too scared to re-test for antibodies and for the presence of the virus after testing positive once for the antibodies. People are not stupid and they know that if they test positive for the presence of the virus then they wind up on the government infection list. Many are indeed still scared of losing employment even though it is against the law, however they know that their co-workers and employers are ignorant of the truth about HCV exposure risk factors.


Far too many people are scared because of the fear that HCV caused during the years non a non b was seen as a dangerously communicable disease and those who had it were and in many ways are still made to feel like Typhoid Mary.


As a fellow professional cook I can sympathise with her and say that the fear of catching HCV from food is largely defined by the fact that most people jump and run when you use any form of the word hepatitis and you are a cook! So the widespread ignorance and fear of this disease must be dealt before the public and politicians will act.


Over the years post diagnosis, because I have been open about the fact that I had HCV many people have opened up to me in confidence. What I have learned is that the numbers of people who either have antibodies for the disease or are infected is much higher than what the current literature estimates. Like polio this curse can be eliminated but it will take political action on a large scale the same way we deal with other diseases that debilitate and slowly kill people in the millions.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Ignorance
« Reply #4 on: April 23, 2016, 12:17:36 pm »
I have ranted re: stigma on this forum several times based on my own experiences, and I am sorry to hear examples of how mean and insensitive people can be. What's their point? Makes me angry/disgusted/sad.

However -- as knowledge slowly but surely becomes available on all aspects of this disease, there will be a more balanced understanding, it's just not going to happen fast enough.  I found an article on the EASL website I shared on another forum topic titled "Hepatitis C virus transmission peaked in 1950 "that was published in Lancet Infect. Disease on 3/30/16, on internalmedicinenews.com.  The bottom line of the study is that when "medical procedures were expanding after WWII at the same time that clinicians continued to reuse metal and glass syringes" the epicenter of spread was closer to 1950 vs 1965, which has been the general belief.  Pretty interesting!

I read this to mean that it was not only military clinicians who were reusing metal and glass syringes, but civilian clinicians, too, due to lack of medical understanding at that time.  This is just one study, but could eventually point to the fact that many people getting HCV did so w/o "risky behaviors".  This is a very fluid area of medicine and there is still much to learn.

So, there will be a lot of info published in the next several years, some of which will be good and some not-so-good, but that's where we're at.  Researchers have come a very long way but there's still a long way to go. I am grateful for this forum and the abundance of support and information available to all of us.  FT

Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Luna7

  • Member
  • Posts: 183
Re: Ignorance
« Reply #5 on: April 26, 2016, 10:27:56 am »
I feel a little guilty for not 'coming out' yet. Maybe in time, but right now I just don't want to see 'that look' on people's faces.

When I do tell more people, I will not qualify it by explaining how I got it (I will not make sure they know it wasn't from being somehow 'bad'...'dirty'...'irresponsible'...all those blaming attitudes so prevalent now).....doing that feels like a slap in the face to those who got it from drugs/sex.

I was really irritated at my first Dr.'s appointment...most of the intake form was composed of questions about drugs and sex...really weird stuff that I can't see relating to HCV even.
« Last Edit: April 26, 2016, 10:30:09 am by Luna7 »
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Ignorance
« Reply #6 on: April 26, 2016, 12:54:25 pm »
I know exactly what you mean (people's facial expressions & tone of voice -- this includes medical professionals!!). We humans seem "wired" to be judgemental, even when educated. The thing is, all of us are going to have to disclose this treatment for the rest of our lives in our medical histories when we change/add doctors, and I am now ready to have an appropriate conversation about inappropriate/unnecessary reactions the next time it happens. I wasn't in the past. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Luna7

  • Member
  • Posts: 183
Re: Ignorance
« Reply #7 on: April 28, 2016, 10:50:02 pm »
I know exactly what you mean (people's facial expressions & tone of voice -- this includes medical professionals!!). We humans seem "wired" to be judgemental, even when educated. The thing is, all of us are going to have to disclose this treatment for the rest of our lives in our medical histories when we change/add doctors, and I am now ready to have an appropriate conversation about inappropriate/unnecessary reactions the next time it happens. I wasn't in the past. FT

So true...we are all way too judgemental without some conscious work to minimize this tendency.

What will you say now when you receive an inappropriate/unnecessary reaction?  I've been imagining some...going from funny to entertaining to simply being a total snot.  Who knows what will come out when I encounter it again... ;D
I would relate some of my fantasies but tonight I'm so spacey I probably should not even be posting on forums. Maybe tomorrow.
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Ignorance
« Reply #8 on: April 29, 2016, 12:28:56 pm »
LOL!! Yes, there are many different responses we can give to "the look" or "the tone" or the type of question.  Your question is making me put some more thought into this, so here goes. I'm addressing the medical profession here:

I think I would inquire as to WHY the look or tone or question? It would be interesting to see what the answer would be. There is some new info that poor medical practices back in the '50s may have contributed to HCV transmission. Some get this thru tattoos, blood transfusions, possibly in the military from air jet vaccine guns..... the list goes on. We don't have all the answers yet.

What they need to know is: are we participating in risky activities NOW, w/ examples provided in a nonjudgmental tone, and how long do we think we've had it. Then a discussion, not accusations, about this disease, it's possible transmission routes, and our health. The history needs to be asked sincerely and compassionately, not judgmentally. There is a wealth of literature on the psychology & methods of listening and facilitating an honest dialogue between medical provider and patient. The majority of mine have failed miserably.

These professionals need to be appropriately confronted when their choice of communication is not conducive to what their goal is supposed to be: Understanding our medical conditions and treating them to the best of their ability. I welcome others thoughts on this. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline morab

  • Member
  • Posts: 232
  • Lives in the woods
Re: Ignorance
« Reply #9 on: May 16, 2016, 04:58:06 pm »
NYCHEPCMAN
That is a sad story you had to go through. I have told so few people for that very reason. Even well educated people will judge and have fear.
I know that most of the people I know would judge me!
And that really makes me a reclusive person, I do not trust easily any more.
Hang in there and may we all be cured soon as well as the masses of people who need the drugs we are getting now.
Morab
3/2016 G 1a
Alt 84
Ast 62
Fibrosis score lab 0.66
quantitation 894,670
4/23/16 day 6, naive Harvoni 12 week treatment
5/27/16 week 4 lab results UNDETECTED AST 23 ALT17

 


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