Health Organization for Pudendal Education

Wow! That's sad. How ironic they said, "you have a lot of nerve". If they only knew the nerve WAS the problem! I have thought about trying to get a handicap sticker sure would be helpful especially when dealing with a child, like you.

A's Mommy wrote: For as long as you've been around on the forums, you've NEVER heard of ANYONE apply for a handicapped permit?!?!

No, I never have, or I wouldn't have said so. Two people have spoken up, one had it only pre-op. So, now I'm not even sure it's a common practice even in this population.

Obviously I'd heard of people I've known get them for other reasons, but never PNE.

I've had a blue parking badge for a while now, the pain clinic recommended that I apply for one and I was approved with no problems at all. I don't always use it, but driving is always a problem for me - less so with my cushion, but still an issue - and pushing a shopping trolley is most certainly a problem. It makes the difference for me, it means that I can manage.

Although I have no idea whether I have PNE, I do definitely have PN.

Faith wrote:How ironic they said, "you have a lot of nerve". If they only knew the nerve WAS the problem!

Ditto that, Faith!
AM - Please count me in for helping with CME! Your title to this thread says it all: UNBELIEVABLE!!!
With love and support,
Karyn

A's Mommy wrote: I was wondering if we could work together to form a CME presentation from the PATIENT'S PERSPECTIVE. Obviously, we would have to get a doctor (one of the PNE's would be the best, hopefully) to back us up medically, but we could make video testimonials from patients, put them into the presentation, get it accredited by the ACCME, and boom --- educated general practitioners everywhere during their grand rounds, especially at teaching hospitals. If the next generation of doctors can be aware of this disease, they can look for the warning signs, get patients early and PROPER testing, and perhaps become inspired to learn the surgical techniques and evolve the surgical techniques themselves. .

AM, I think it's a terrific idea and it sounds like you have a bit of a plan in place. Maybe if you make up a list of tasks that forum members could help out with, members could volunteer for the various tasks. Are you thinking of asking one particular physician or do you think it would be a good idea to type up a letter and invite all of them to participate?

Any idea what type of funding is required for such an undertaking?

Years ago Greg told me about a patient who started making a documentary about life with PNE, but I never heard anything further.

How awful that must have felt to come out of the grocery store, exhausted, hurting, taking care of your child, and then finding that note.
It should never have happened.
I've often thought about making a t-shirt that shows on the outside what it looks like on our insides.
I'm so sorry sweetie. (((((((((hugs)))))))))
- Sharon

Violet M wrote:

A's Mommy wrote: I was wondering if we could work together to form a CME presentation from the PATIENT'S PERSPECTIVE. Obviously, we would have to get a doctor (one of the PNE's would be the best, hopefully) to back us up medically, but we could make video testimonials from patients, put them into the presentation, get it accredited by the ACCME, and boom --- educated general practitioners everywhere during their grand rounds, especially at teaching hospitals. If the next generation of doctors can be aware of this disease, they can look for the warning signs, get patients early and PROPER testing, and perhaps become inspired to learn the surgical techniques and evolve the surgical techniques themselves. .

AM, I think it's a terrific idea and it sounds like you have a bit of a plan in place. Maybe if you make up a list of tasks that forum members could help out with, members could volunteer for the various tasks. Are you thinking of asking one particular physician or do you think it would be a good idea to type up a letter and invite all of them to participate?

Any idea what type of funding is required for such an undertaking?

I will email the lady in charge of the CME firm I worked for today.

As far as funding, usually some doctors are registered with "speaker's bureaus". Back when I worked for CME, docs were paid money by the drug companies to speak, say, if they were doing a talk on DVT Prophylaxis (Deep Vein Thrombosis Prophylaxis), and a drug company had an interest because their company made warfarin or heparin or something like some blood thinner that would help.

Usually, these drug companies would pay all expenses plus an honorarium anywhere from $250-$2,000 (at least what I saw when I worked there in 2005-2006). I guess what we could try to do first is:

1. Contact the physicians and see if they would be willing to speak.
2. Ask the physicians if they are currently on any speaker's bureaus of any companies (Sanofi-Aventis, Merck, whomever, maybe even the company that makes the neurawrap!) When a medical company can get their product promoted in a surgery/procedure, whatever, they are more often ready to open up the checkbook.
3. If #2 is a no-go, we as the patients can put together the PowerPoint presentation. We can assign certain portions (video interviews, scholarly articles, statistics, etc.) to certain volunteers willing to help, and then go from there.
4. If a PNE physician is not willing to do this and doesn't have the time to speak on our behalf, I am working on something else. I may have a physician who is willing to at least take the PNE message to my local area. Maybe if the fire spreads, the presentation can be passed along to either the IPPS board and they can take control of it, something like that.

Any more thoughts???

Warm regards,

AM

A's Mommy wrote:I may have a physician who is willing to at least take the PNE message to my local area.

With your personal influence with this doctor, you should work on getting him to take up the PNE surgery.

I'm trying!!!! Wish me luck.