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Any ideas on bringing awareness to a public forum?
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04/13/11 18:32
debrr 
04/13/11 18:32
debrr 
Any ideas on bringing awareness to a public forum?

This forum is fantastic for all of us!! Without it, we would certainly be lost and probably more physically damaged!

But I was wondering the other day, why on earth does the general public have no awareness of this crippling disease (all of them, not just LD)??????

I wrote Oprah and The Doctors (TV shows here in the US) practically begging for some answers. No response.

As you all have experienced, even doctors know little to nothing about this disease and how to manage it. This forum is great for suggestions, experiences, etc. but I don't think we are going to get any where without the public being aware.

Does anyone have any ideas other than Oprah and The Doctors? Any one out there famous??? Maybe we need to find a famous person to get behind us!!

Debbie

04/13/11 19:28
spanishbuddha 

Administrator

04/13/11 19:28
spanishbuddha 

Administrator

Re: Any ideas on bringing awareness to a public forum?

Well wikipedia says Maggie Thatcher and Ronald Reagan had/have it, but they can't help us much as a spokesperson. Bill Nighy is a well know UK actor but probably not so well known outside the UK. He has not had his contracture straightened but keeps the DD affected hand out of view most of the time.

I think it would be great to get someone famous as you suggest to perhaps sponsor us, be a patron, keynote at conference and so on.

04/13/11 23:56
LubaM. 
04/13/11 23:56
LubaM. 
Re: Any ideas on bringing awareness to a public forum?

Debbie...
great idea... what about writing to Dr. Oz? or just local news stations?

04/14/11 01:07
Larry 
04/14/11 01:07
Larry 
Re: Any ideas on bringing awareness to a public forum?

The most famous person would be the POPE !

http://stepjourney.wordpress.com/2010/04...popes-blessing/
http://www.scrubnotes.com/2008/02/popes-...-claw-hand.html

A matter of fact, Pope PIUS XII and GREGOR VII had Dupuytren !




So may be ... we write ... we pray ... and we hope !?

04/14/11 02:16
Pinetrees 
04/14/11 02:16
Pinetrees 
Re: Any ideas on bringing awareness to a public forum?

One thing I am sure of...people with DC are very creative! LD, too! I have both!

04/14/11 05:46
Cyclist 
04/14/11 05:46
Cyclist 

Re: Any ideas on bringing awareness to a public forum?

You could search your State and Federal Health Departments/Ministries websites to check if there are any Consumer Committees or web pages and contact them to ask if they could post information and links to this website

That would get this forum circulating and perhaps some researchers might pick up on the issue

04/14/11 23:39
debrr 
04/14/11 23:39
debrr 
Re: Any ideas on bringing awareness to a public forum?

Ok one simple step, I did email Dr. Oz, we'll see if there is any response....

I looked up famous people with Duputryens....(Wish it was easier to spell). In the "living" category:
David McCullum and Bill Nighy. Anyone know them?

Will also try your suggestion, Di.

Can anyone else pitch in from their countries?

It would feel really good to at least know people aren't being misled to surgeries and also to know future generations don't have to go through what we are going through!

04/15/11 00:40
debrr 
04/15/11 00:40
debrr 
Re: Any ideas on bringing awareness to a public forum?

Okay, everyone, PLEASE join in and perhaps bombard these websites:

http://www.cdc.gov/az/azfaq.html#suggest

http://www.hhs.gov/feedback.html

http://feedback.nih.gov/

https://info.ahrq.gov/cgi-bin/ahrq.cfg/p...ubCZwX3BhZ2U9MQ!!
created acct after I finished the ask a question form. Only way to submit question.

http://www.healthfinder.gov/aboutus/contactus.aspx

We will have more of a chance with more people speaking up!

Not that I want everyone to know my medical issues, I wanted to copy what I wrote for those of you who need an idea:

"Please consider including a disease that takes several forms in your database: Dupuytrens, Ledderhose, Peyronies, Frozen Shoulder, Knuckle Pads.
Also please consider adding a link to http://www.dupuytren-online.info/index.html because this is only website to date, that even covers any options or information!
I hate to think I have survived a heart attack and cancer, only to lose my ability to walk because of this disease! Thank you!"

We need to have a united voice, and we need someone to become a "public spokesperson" for us! Please can someone help find us someone?

Thanks! Debbie

04/15/11 15:40
Cyclist 
04/15/11 15:40
Cyclist 

Re: Any ideas on bringing awareness to a public forum?

Hi Debbie
Thank you for considering others and putting this energy into some advocacy

Here are a few more ideas, for you and also for all of us to consider (although they may be a bit time-consuming):
1. Contacting our radiation oncologists en masse to let them know our plight and request that they consider writing publications, or at a minimum, collecting researchable data. Once researchers publish material, it gets presented at conferences and educates others and stimulates further research interest. This is the key way to solve our problem. Debbie - I think your photographs would interest them as it's so obvious that you would be suffering functional impairment with nodules that size .

2. The general practitioners here in Aust and also in the UK are afraid of RT and won't tell patients about it even when they are aware that surgery doesn't lead to good outcomes. We need to find a way to educate them about a patients' perspective when left stranded in the health system just because you have a rare condition (apparently 18 per cent of conditions presented are in the 'rare' category, which makes this a serious issue).

There are several magazines available online directed at general practitioners that might be willing to publish our story, (specialists tend to have more formal journals not available in the public domain).

Another way forward is to contact the general/family practitioner/physicians professional bodies (e.g. the Royal College of Australian General Practitioners and the Divisions of General Practice/Medicare Locals for GPs here in Aust). It could be complicated working out who all the players are, but consumer groups should be able to help you to navigate the system.

3. Perhaps we could write to the media, that might be a way of drawing attention to the issue. We could broaden the issue to make it a story about all sorts of conditions that suffer the same fate when doctors make recommendations for treatments such as surgery despite the fact that the consequences are awful for patients. I think the public would be interested that this can happen to them or someone they know.

4. You could also try finding a consumer organisation that might be interested in advocating our cause

5. Another idea is that we could all post our stories on youtube. you can stay anonymous if you prefer - just let your feet (and hands) do the talking, but also let people know that there are alternative treatments available and what the issues are.

Here's a link to a podiatrist on youtube: http://www.youtube.com/watch?v=WaVyZZ0i0Ik, who manages to recommend surgery in some cases and then goes on the explain 101 reasons people should NOT have surgery! He got so painful, I couldn't bear to finish listening.

We really need to post something along-side his uninformed waffle.

Anyone up for the youtube challenge??!!

All the best
Di

Edited 04/15/11 15:50

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