Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I went back to check something in a wonderful book, "Twice an Angel" and read again this wonderful afterword to the book, written by a physician, whose name I will not post. (I typed it out and broke it up to make it more readable for Lyme patients who have difficulties reading solid blocks of print)
I was so stunned by how cogent this eloquent, caring statement is all these years later. Nothing has changed!!!
I hope it inspires you to continue to fight for what is right and is our right. Ann-OH
[Afterword from "Twice and Angel" by Susan Umphress and Marilyn Nelson - 2000]
[quote] I found the tragic story of Jenny Umphress extremely painful to read. Painful because of the suffering Jenny and her family and friends endured, and painful because in my medical practice I see so many stories like Jenny's story.
Luckily, most patients are not affected by Lyme disease as extremely as Jenny. But, many cases I have seen are alike in that Lyme is not considered as a diagnosis because "there is no Lyme in this area" or "your Lyme test was negative" or "two weeks of treatment and Lyme is cured so whatever problems you are still having , it isn't Lyme."
Sadly, in 1988, Lyme was not as well publicized as it is now and sadly, even ten years later, Lyme was still under-researched and under-funded and misunderstood.
As a physician who treats Lyme disease, I well know the feeling my patients have when they are not taken seriously or have been mistreated by the medical community. Everyday I talk to people like Jenny's mother who are told they or their family member needs psychiatric help because their physician is unable to accept Lyme as a diagnoisi.
Lyme disease is still a mystery illness. We have miles to go before we begin to fully understand its effects on the human body. Caught early and treated adequately, it is very curable. Let it progress into a chronic stage and the battle is, indeed, uphill with two steps back for every one forward.
It becomes increasingy difficult to prescribe adequate treatment for late stage Lyme as we must fight insurance companies, the CDC and sadly, other members of the medical profession.
For everyone who has struggled with Lyme disease, for their families, for all the support groups and for the handful of physicians who continue to treat Lyme patients, this book should inspire them to rededicate themselves. Hopefully, working together, we will be able to prevent another tragedy like Jenny.
To Jenny's family, I should like to extend my deepest sympathy. Your ordeal should never have happened. Hopefully you will be able to glean some small measure of peace in knowing that Jenny's story will impact Lyme treatment in this country.
Jenny lives in every success story, in every patient who has fought and won, and in our hearts and minds forever. [end quote]
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I have that book, too- and boy did I weep reading it- the doctor that treated Jenny had her license restricted so she couldn't treat Lyme anymore- the doctor that brought Jenny out of a full coma if I rememebr right!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
very touching Ann; hadn't heard of that book before.
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Cobweb
Unregistered
posted
Thanks I added the Title to my list for next trip to library.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
It is the most depressing book I have ever read in my life and I have read a lot of depressing books. It was written by Susan Umphress, Jennys MOm. It is very, very sad. But I am glad I read it. I am glad I know who Jenny Umphress was-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hey! Wait a minute!
I wanted people to read the doctor's statement I typed out to post and appreciate his thoughts and comments. Not to talk about how depressing the book is (was)!
My point seems to have been buried in comments about the book.
The book is about a wonderful girl and her family and her life and death with Lyme disease. The author(s) are dear friends. As far as I know, the book is now out of print.
Now back to the AFTERWORD and the fact that after all these years it rings true for now. This doctor is so honest and caring....
I know he is just as frustrated now as he was when he wrote this.
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