Neurofibromatosis Books

The very nature of this topic is difficult to accept given its sadness. However, with only the very-well-made movie to capture its subject, this book helps define everything, thereafter. Nothing can alleviate the weight of its subject matter; but, it does help one to interpret the man, more than the mystique. Ultimately, it makes you glad that Mr. Merrick did have a graceful exit from life given the dire physical deformity that shaped it.

This book cannot help but touch every human being who reads it! With so many disabled people in our world, and our pre-occupation with appearances and the body beautiful, the elephant man story covers all the physical and emotional aspects of living with an extreme disability with dignity and humility for all readers to experience. Of course the help and support he and others must receive all helps. Peter Ford presents his extensive research findings on those that came to the elephant man's aid in a personable way. Although the film is based on his life, the book reflects Joseph Merrick's life in reality, politely comparing the differences between his film persona and his real life condition. It helped me to fill in the gaps left after watching the film and left me with a thankfulness of how well off my family and I are.

'Tis true my form is something odd
but blaming me is blaming God,
Could I create myself anew
I would not fail in pleasing you.

If I could reach from pole to pole
or grasp the ocean with a span,
I would be measured by the soul -
the mind's the standard of the man.

I bought this book many years ago, unfortunately I made the mistake of lending it to someone and I never got it back. This is a remarkable book. I was touched by Joseph Merrick years ago. For the past nine years, I have been running the Joseph Carey Merrick Tribute Website. It is a site dedicated to Joseph, the person - not Joseph, the disability. I'm presently heading a London and Leicester (UK) campaign to have a commemorative plaque erected in his honour. He deserves to have a permanent tribute. He has done a great deal to advance medical science, through his skeleton, and thanks to him, there will one day be a cure for Proteus Syndrome. It's time the world said 'thank you'. Please give your moral support by visiting the site. I'm not sure if web addresses can be mentioned here, so simply type the following in your web browser: Joseph Carey Merrick Tribute Website

Very good and in-depth book on the life of not only Joseph Merrick, but also Mr. Treves and many other people who happened into his life. Can you imagine even for one minute being in this guys shoes? I mean can any of us even begin to grasp the sort of life Joseph must of had to deal with? Can you imagine being so utterly repulsive looking (sorry, but he was) that just one glance at your face would make people flee, children cry, and women pass out, I mean think about just how horrible that would have been. He also suffered from chronic pain, and smelled something awful. Yet, beyond that he was such a kind, gentle, shy, caring, lovable and curious individual, who by all accounts would of been completely normal and was highly intelligent. What a life, what a great true story of a very strong determined soul.

With twelve viewings so far, David Lynch's "The Elephant Man" has been my favorite movie for about twenty years, indeed one of the very few movies I would call a masterpiece. So it is quite a mystery why I should have waited so long to read this biography of its protagonist, Joseph Carey Merrick, whom the movie, following errors in the source material itself, incorrectly names John.

Having already seen a decent BBC documentary on the subject ("The Curse of the Elephant Man"), I was not totally unaware of the facts of the case, and I already knew for instance that Joseph spent some time in the countryside, something which Lynch decided not to depict in his film so as to achieve a more complete immersion in his bleak, black and white vision of Victorian London (indeed, one type of shock a fan of the movie will encounter while reading the book comes from its occasional touches of colour : I remember being struck by the blue bunsene light that lit the Elephant Man's face when Treves first met him.)

What is most surprising about the book, is how the film managed to be so faithful to Merrick's psychology (Lynch's John is the true Joseph, not some Hollywood fantasy), while altering many elements in the background, most of the secondary characters being dramatically different.

To mention a few of the changes from reality to film :

Joseph's manager as a freak, Tom Norman, was turned by the screenplay into Freddie Jones' very Dickensian Bytes, who beat and exploited his freak. Actually, Tom Norman was one of the few decent persons whom Joseph encountered before his change of fortune, enabling him to save as much as £50 (enough to live for a year without working) over his short career. The true evil was in fact the British government, which decided to ban all exhibitions of freaks as indecent (and references to Joseph's "nakedness" suggests that they may well have been), thereby forcing them out of the market and depriving them of their livelihood. To the writers' discharge, though, it might be argued that the fictional Bytes was a composite of Norman and the evil Austrian impresario who robbed Joseph of his savings in Belgium, which somewhat minimizes the gratuitousness of an all-too-typical Hollywood slur on the entrepreneur.

One of the famous scenes of the movie, in which Joseph attends a pantomime, is asked by Treves to "stand up" before the audience and is applauded by them, is a complete reversal of the true incident. Actually, Joseph attended the show incognito, and the most stringent precautions were taken to keep the rest of the audience unaware of his arrival, presence and departure (but then, the screenwriters needed their second "stand up" scene for dramatic reasons.)

In the film, Anne Bancroft's Mrs Kendal is shown visiting Joseph regularly at the hospital. Actually, the actress never met him in person, though she did send him her photograph and other presents. On the other hand, Princess Alexandra, who is shown much more sparingly in the film, did visit him several times, and send him Christmas cards.

The scene in which Michael Elphick's night porter introduces a bunch of drunks and prostitutes into Joseph's rooms may also be an exaggeration from much more minor real-life incidents. Also, on his return to London, Joseph did not find refuge in the toilets, but in the waiting room of the railway station. As for the model church he made, Lynch hides the fact that Joseph was actually using commercialized cut-and-assemble models from the local bookstore, which the nurses helped him assemble. The film makes it appear that Joseph had some wonderful artistic gift and was very dexterous, whereas his enormous right hand prevented him from even working in the cigar industry.

One thing I was curious about was Joseph's religion, as the film has very little to say about it, or about religion at the hospital in general. His mother was a Baptist, and the Bible was a book he had read several times over. When at the London Hospital, he was "confirmed" by an Anglican "bishop" (I am using scare quotes because as a Catholic I believe Anglican "bishops" are not validly ordained and, being mere laymen, do not have the power to confirm anyone) and allowed to participate in church services at the chapel.

Howell and Ford's book is truly a biography everyone should read. It gives an excellent picture of Victorian London, conditions in Poor Houses, the whole milieu of country fairs and freak shows and life at the London Hospital. It also contains a two-page autobiographical piece by Joseph himself, and the relevant extract from Treves' famous "The Elephant Man and Other Reminiscences", but it is well-researched enough to point out the few errors and inaccuracies in these primary sources themselves. It also corrects erroneous interpretations in Ashley Montagu's earlier book on the subject.

All in all, this is a superb read, which could serve as concrete argument against a culture of death which is too ready to consider some lives not worth living. "Happy every hour of the day", after all, was how Joseph himself described his life at the hospital. And his happiness is one of the things most readers will paradoxically end up envying him.

Unlike the (brilliant) play and movie of the same name, Frederick Drimmer's "fictional biography" of Joseph Merrick, THE ELEPHANT MAN, aims to tell the subject's true life story, based on accounts of those who knew him. I first read THE ELEPHANT MAN as a teenager in high school. Revisiting the book now as an adult, I find there is little I can add to the apt assessment of the reviewer quoted here on Amazon.com. I'll only repeat that Drimmer, an authority on so-called human oddities and a gifted writer, tells Merrick's sad yet inspiring story tastefully and with drama and interest in every chapter. Merrick's humanity and that of his doctor, Frederick Treves, and his other friends shines through brightly, yet the evils present in British Victorian society are not underplayed. Consequently, THE ELEPHANT MAN reads like both a biography and an entertaining work of fiction, suitable for both young and older adults.

THIS BOOK IS A MUST READ IT IS A TRUE STORY ABOUT A MAN JOSEPH CAREY MERRICK WHO SUFFERED A DISEASE PROTIO-SYNDROM WHICH DISFIGURED HIM. ITS ABOUT HOW HE LIVED AND HOW HE SPENT HIS TIME WITH HIS DOCTOR. THE WHOLE BOOK IS GREAT I FOUND IT VERY INTERESTING AND TOUCHING. BUT IN ALL I WOULD RECOMEND THIS BOOK TO ANYONE. -RANDY

I was very touched by the story of the Elephant man, who was very deformed and endured many hardships in his childhood and young adult life because of his appearance. His life becomes bearable though in his end years thanks to the kindness of Dr. Fredrick Treves and many other people. If you haven't heard of or read about the Elephant man yet, I recommend this book, Joseph Merrick's story (the Elephant man) is something you won't forget. The terrors he went through and then how incredibly grateful he was for the simplest pleasures after being rescued by Dr. Treves make me see life through new eyes: it is hard to take things for granted. The book also includes photographs of Joseph.

The movie, which I saw when I was 7 was a lie. Tom Norman, his manager in the freak show treated him with great respect and was a portaryed as a monster. He was never stolen from the London Hospital and was not beaten. The movie focused on the bad of his life but not the good. Sir Fredrick Treves (forgiven an misspelling,s, I am only 12) the sugeon that helped him was a great man and help John and brought out the good that most overlooked because of his appearance. He is man i would love to personally meet and this book helped me realize that he was a smart man, a caring man, a loving man....This book would help anyone interested in this subject with it's photos and insight.

My three year old son was recently diagnosed with Neurofibromatosis type 1 and I have been disappointed by the amount of medical literature avaible on the subject. This book was one of the most helpful I have come across in terms of NF. I have found that with NF, the patient needs to understand the disease enough to teach some medical professionals. Unless we are seeing a specalist, many doctors are unfamilliar with the disorder. This book is a must read for the physician and the patient.

I bought this book after I found some rave reviews on the internet. It's costly but worth every penny as it's full of so much relevant information! Thank you Bruce Korf for writing this book!

This is a must read for anyone with NF or anyone who has a loved one with NF. It has helped me with some symptons I have been having and I know have had the proper tests, now awaiting results. It is a MUST HAVE for ALL HEALTH CARE PROFESSIONALS.
I realized while reading the personal prospectives form individuals with NF that I took part in the study but was not used in the book.
I have my sister and niece to THANK for the book.
IT IS A MUST HAVE AND READ BOOK.

I would like more information about Neurofribrom- atisis because I have it and I need to learn more about it. Thank You