May1st our 1ST ANNUAL PNE Awareness Day!

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May1st our 1ST ANNUAL PNE Awareness Day!

Postby helenlegs 11 » Mon Apr 29, 2013 11:16 pm

just saw this posted on and thought some people would be interested. I don't know anything about these TV programs mentioned (live in England).

May1st our 1ST ANNUAL PNE Awareness Day! We are going to join forces to make others aware of this debilitating-life alerting nerve condition

Just a reminder we have ONLY 3 days left, until we start flooding emails to educate others about PNE and our Daily Struggle. This is to educate in any/every way possible, this time we Chose May 1st 2013 to flood email in the below article. Write your Stories and share for education!'s official...May 1st is our big day! We're going to dub it 1ST ANNUAL PNE Awareness Day. What does this mean? We are going to join forces and stand up for one day and fight together, about all of our experiences and stories, we need to bring awareness about this debilitating, life alerting nerve condition.
How? The plan and idea is to flood the emails of the current TV talk shows, with our stories i.e. struggles, hardships, challenges, the symptoms. All of our concerns regarding the lack of knowledge and treatments offered to us, and desperate pleas for the much needed research and clinical studies to better understand and treat PNE...
This gives everyone 5 more days to get a story together or if you choose just leaving a remark or comment will work too. Shirlayne will post links the last day of April so all you'll need to do on May 1st is click on each link and share your story. She is making it so easy for us…all we have to do is send our stories.
We are challenging everyone to participate as to make such a big impact, on PNE & the lack of education nationwide. Hopefully we will be able to open someone’s eyes and maybe a door for our suffering community.
Here is what Shirlayne has gathered so far:
• Doctor Oz
( No subject for now...I didn't see one that pertained to us in his "be on the Dr. Oz show" we'll just contact his show through his "contact us" page where there is a box to leave a message)
• The Doctors Show
Suffering From a Repulsive or Alarming Health Issue.
(Do you have a health problem that is hindering you from your everyday life? Do you want answers? We want to help! Please share your story with us!)
• Dr. Phil
Health Problems Getting in the Way of Your Life?
Are your health problems getting in the way of your job? Are you being held back by your symptoms? Does your health affect your social life?
We want to know how your health problems are taking a toll on you!
• Katie
There is a tab for "your Stories" but it seems to be down, other than, that I didn't see a way to contact the show? We could always flood her FB page if it comes down to it.
Any other shows that this group is interested in please, share it with us before April 30th. Thank you!

FROM ... n?ref=home
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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helenlegs 11
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Location: North East England


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