Re: Re: Keep the Faith!

[Guest guest]

Dear : Thank you for your introspective and kind words. I know this thought may be "out there"; but, I have considered contacting Oprah Winfrey with respect to airing a show on this topic. Politically speaking, the time is right for her to be continuing her benevolent acts. She certainly has the resources to start a book club...why not resources to begin studies in EN research? MORE IMPORTANTLY, WE NEED EXPOSURE! I believe Scleroderma got a lot of $$$ funding after various talk show hosts had actual patients on. Of course, Bob Saget's movie about his sister also helped further research. Food for thought. Have a pain free night and think good thoughts. Love, PS: I raised $2,000. this Hannukah for a local food bank. I'm pretty good at persuasion. I think

I can help in fundraising, if you wish. I am not working now due to the UC and EN...but I want a cure for everyone, not just myself. I will send $ as soon as I can pay my insurance deductible. UC and EN are the "cadillacs" of illnesses, the prices of meds are insurmountable and I pay for my own insurance. Ka-ching! Had to sell my house and move into smaller place as I am still paying off last operation for UC. There but for the Grace of God go I. We shall overcome. xxx ooo & a big Strecker wrote: Dear ,Thank you for your words of encouragement, and I must say you have abeautifully poetic way of expressing yourself.The problem we face is one faced by all rare disorders. Researchfollows money and a relatively few number of ill people with a raredisorder usually does not generate enough research dollars [unless asufferer has deep pockets, is a celebrity, or gets corporate backing].So far we have not found that voice who will say the word and make thedollars flow to the researchers. Without research our treatments are limited. In fact most of ourtreatments are not specific for EN or PG. They are for autoimmune orother inflammatory skin disorders. Often insurance will not pay for off label medication and dr.s areoften reluctant to try them

and risk lawsuits. These problems are not insurmountable but they are difficult. I read about a child born with a rare disorder. His parents werescientists and they started their own research with the help of theirfriends. Some lucky breaks and they figured it out and made hugestrides with this very rare inherited disorder. I can't even rememberthe name of the disorder. It was so rare I had never heard of it. I don't know why, but our group, while not nearly as rare as manydisorders, has been reluctant to donate to fund our own research. Iagree that is is not fare that we have to do it, but life is not fare.Believe me, if a famous person came down with EN or PG and decided topublicize it and raise funds, we'd have researchers falling overthemselves to find treatments and cures. It's all about the money.Wishing Everyone a pain-free night and a Happy Day Tomorrow!Love,idio. EN

'68>> Hi All!> Thank you for allowing me in your Group.> Your comments and shared experiences are > very helpful.> I hope I am following rules of posting correctly,> I never belonged to a Group before.> That being said, the one thing I have found> within myself in this "Circle of Hell" which> Dante excluded from his Divine Comedy is to> keep my chin up and KNOW that my symptoms> are REAL even when doctors disagree amongst> themselves. Let's face it, no one wants to> be sick...but we do want and deserve proper medical > treatment. From what I assess thus far in> the postings, EN is so rare that Derms> rarely see it...but that is still not a viable> excuse for a

toss-off!> As I've gone from derm to derm, my symptoms> and "story" never waivered. How can it?> The truth is easy to remember.> I would have to be Rodin to sculp these ulcerations> and an artist I am not!> I am just non-plussed as to why there is such> a reluctance to even opt for a suggestion on treatment!> Are Insurance Companies trapping our Doctors?> Who is really at fault here?> It's as if "diagnosis" has become a four letter word> with doctors.> Why are they so afraid? Or, am I mistaking this for> general apathy?> Just some thoughts from a person facing a challenge,> as we all are.> I hope everyone in Group has a happy day tomorrow...> remember - "what a difference a day makes." Like love,> panaceas may come from the most unexpected places.> I firmly believe that there will be a cure.> The fact that there are more members

clearly indicates> that this may not be all that uncommon...but I do agree> with Tina - I would not wish this on any living creature.> It's awful.> Sending love & hope your way,> I remain,> Yours sincerely,> with love,> >

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