Modern Day Elephant Man Heroes
Welcome back!
Joseph Merrick — known as the Elephant man — shocked the world in the 1800′s with his disfiguring disease. Now known as Neurofibromatosis — a genetically-transmitted disease in which nerve cells grow massive tumors occurring in as many as 1 in 3,000 children — several modern day ‘Elephant Men’ have brought this disorder to the limelight, becoming today’s heroes, with their tales of hope, determination, inner strength, spirit and inspiration. Warning, images are highly graphic.
Photo KOMO News
James O’Neal compares himself to the Elephant Man, painfully aware that his deformity shocks people. Neurofibromatosis has left his face horribly disfigured — but that could soon change with surgeries to reconstruct the Kirkland, Washington man’s face.
“I just tell people this is who I am, it’s the way I am. If you don’t like me, you don’t like me.” he said.
James has lived with his disability since birth, but the tumors stopped growing when he did, and surgery would rid him of the deformity for good.
Photo Katie Knopf
While many afflicted with this disease would rather hide and become a recluse, for 7 years James has proudly worked the cash registers at the local Safeway store in Kirkland.
What to shoppers there say? His customers don’t like him — they absolutely love him and call him an inspiration.
“He is an amazing man and we love him. He’s the kind of person that makes your day.” said customer Aubrey Richins.
However, all of them say they were stunned at first when they saw his disfigured face. “I have to admit I was a little taken back, but when I walked through his line I felt this spirit come over me, this man is out here, not hiding.” said Cindy Peay.
James O’Neal’s story inspired Katie Knopf — a shopper at the store who saw him for “the person he is inside” — to launch a massive charity campaign to give him a new face. Being a preexisting condition that he was born with, his insurance company won’t cover the costs of difficult and extensive surgeries or recovery.
Katie started a website asking for donations for reconstructive surgery. “We want to change his life.” she said. Her ardent efforts have motivated James’ employers at Safeway to kick in the first $10,000. As of this writing, her website reports to have received more than $30,000 in donations.
“James is our employee, he is one of us and we absolutely think the world of him.” said Cherie Myers, Safeway’s director of public and government affairs. “This is just a bonus, this our bonus to him. He never asked for it, he’s never said ‘woe is me.’ He’s proud to be who he is.”
“James will always be the person he is inside. I’m hoping with this he’ll have a new lease on life.” said Katie.
“It makes me feel honored and proud.” said James, stunned to learn his employer is not only donating $10,000, but also committed to helping him deal with the insurance paperwork.
In July, Safeway stores in 4 states will launch a 3-week Canister Campaign to collect donations for James. You can also contribute through KOMO News.
James O’Neal Elephant Man
UPDATE:
James “Neal underwent surgery last month to remove a huge mass of tumors that had disfigured his face for nearly 30 years and became a “new man,” thanks to mass support from locals and online well-wishers which raised $240,000 in contributions.
Photo Friends of James O’Neal
“Looks good, I like it. It’s perfect.” O’Neal said, after seeing his face without bandages or stitches. “Perfect. Oh, yeah!”
“I’ve never had that kind of support before.” O’Neal added. “I’m overwhelmed. I didn’t think it would be this quick.”
O’Neal marveled at his left ear after the surgery which was in its right place, no longer dangling from the mass of tumors, as well as his straightened nose and chin.
Dr. Peter Neligan, director of the Center for Reconstructive Surgery at the University of Washington Medical Center, performed the operation free of charge.
But the surgery was risky. Twice Neligan had to stop the operation because O’Neal was losing too much blood — 28 units of blood were needed during the operation, although the body only holds 8 units.
Photo Friends of James O’Neal
Rather than receiving a full-face transplant, O’Neal opted for a less radical operation to “debulk” his tumors, which removes most of the tissue but leaves some behind.
He will undergo a second surgery in another 6 months to remove tumors from his neck and minor procedures every 5 years should keep further tumor growths from engulfing his face once again.
James has taken the events of the past year in stride although he sometimes can’t believe how strongly the local and global community came together to help him.
“It’s not going to change my personality or nothing.” O’Neal said. “I think I inspire a lot of people just being out working.”
To learn more about James O’Neal’s story, visit the Friends of James O’Neal site.
Neurofibromatosis and Reggie Bibbs
Reggie Bibbs’ face is so disfigured from Neurofibromatosis that he’s spent most of his life shut in so he wouldn’t have to face people. When he did venture out, some stores went to the lengths of locking their doors to him when he attempted to enter.
He says he doesn’t like being referred to as the Elephant Man since he doesn’t suffer the same affliction.
“What really hurts is if someone screams or if they laugh.” says Reggie.
But one campaign and 2 words ‘Just Ask!’ seems to have erased that reaction. This courageous man started his own website and a T-shirt campaign sporting the Just Ask! logo 2 years ago when he grew weary of people staring at him.
Photo Reggie Bibbs
Reggie says he hasn’t had a negative response since coming out of isolation a year ago.
Visit the Reggie Bibbs website to learn more.
Photo Reggie Bibbs
Photo Reggie Bibbs
Reggie Bibbs
An interview with Reggie Bibbs on the Debra Duncan show is well worth the watch if you have the time to spend, or come back when you do.
China’s Elephant Man
Huang Chuncai — otherwise known as China’s Elephant Man — suffers from the world’s most extreme recorded case of Neurofibroma, a steadily growing facial tumor that left him in continual pain for more than 30 years and forced him to withdraw from society at 10 years old to live his life as a recluse.
Photo Reuters
A massive tumor that hung down from his face had a perimeter of 38.2 inches (97 centimeters), and measured 22.4 inches (57 centimeters) in length, completely obscuring his features.
At 31 years old, Huang said he had never had a happy day in his life.
His facial tumor became noticeable when he was 4 years old and grew bigger ever more rapidly as he grew older, blocking his left eye, pushing his left ear to shoulder level, knocking out his teeth and deforming his backbone.
Neurofibromatosis had crippled Huang — who was merely 4.5 feet (1.35 meters) tall — with difficulties in breathing, eating, hearing and seeing, aside from the extreme discomfort, but he underwent surgery nearly a year ago in hopes to change all that.
Photo Metro
The operation at Fuda Cancer Hospital in the southern Chinese city of Guangzhou for the 32-year-old from a remote village in China’s southern province of Hunan, took more than 10 doctors and nurses in the hour-long surgery to remove 33 pounds (15 kilos) from what was originally a 55.7 lb (23 kilo) tumor on his face.
In January 2008, Huang Chuncai underwent a second operation to remove another 9.9 lb (4.5 kilo) tumor from his face in hopes that it will transform his future.
China’s Elephant Man Huang Chuncai
Huang Chuncai After First Surgery 2007
Joseph Merrick Elephant Man
Neurofibromatosis was once thought to be the sole cause behind the deformities of Joseph ‘The Elephant Man’ Merrick. While that theory is likely incorrect, it’s easy to see why the disease was pegged. Many researchers still believe Merrick had both Neurofibromatosis and Proteus as his deformities are not typical of either affliction.
Eddie Newton, the gentleman in this video has a serious form of Neurofibromatosis. Lesser types manifest in small knots and skin tags.
This video predates the discovery of Joseph Merrick’s proper name — Joseph, not John — as well as his diagnosis of Proteus Syndrome, a congenital disorder that causes skin overgrowth and atypical bone development, often accompanied by tumors over half the body.
Joseph Merrick and Eddie Newton – Elephant Man
JWhat is Neurofibromatosis
Neurofibromatosis is a genetically-transmitted disease in which nerve cells (Schwann cells) grow tumors (neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues.
The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.
There are 3 types of neurofibromatosis — NF1, NF2 and Schwannomatosis — Gina Agiostratidou, a biologist and scientific program manager for the Children’s Tumor Foundation (CTF) in New York, told FOX News. All 3 are caused by deletions or mutations of certain genes.
NF1 — the type suffered by O’Neal — is characterized by large benign tumors that grow on the cranial nerves, face, brain and spinal cord. The disease occurs in about 1 out of every 3,000 births and is more prevalent than cystic fibrosis, according to the CTF.
NF2 is much rarer, occurring in 1 out of 25,000 births, causing tumors to grow on the cranial and spinal nerves, as well as both auditory nerves, often resulting in hearing loss beginning in the teens and 20′s.
Researchers know very little about Schwannomatosis which occurs in about 1 of every 40,000 births and symptoms differ greatly among sufferers.
Neurofibromatosis is inherited through a dominant gene, which means that if a child gets one gene for neurofibromatosis from one parent, and a normal gene from the other parent, that child will have neurofibromatosis. Therefore, if only one parent has neurofibromatosis, his or her children have a 50% chance of developing the condition as well. Disease severity, however, can vary.
“There are so many different manifestations of the disease.” Gina Agiostratidou explained. “Surgery is usually a last resort because it does affect the nerves and removing the tumor can create paralysis of the nerve.”
“Currently, the treatment includes chemotherapy (and then) surgery, and we are working on clinical trials for different medications, but it is still very early for us.”
At the moment, there is no cure for neurofibromatosis, she said.
Gillian Anderson, who played Scully on the X-Files is a spokesperson and helps in raising funds for neurofibromatosis, as her brother suffers from the disease.
In March 2008 the treatment of 30-year-old neurofibromatosis victim Pascal Coler of France ended after having received what his doctors call the world’s first successful full face transplant.
Help for Sufferers of Neurofibromatosis
One man, Dr. Hubert Weinberg, a plastic surgeon from Mount Sinai School of Medicine, located in New York City, U.S. is making a difference for sufferers of NF with new surgical treatment options for neurofibromas.
In one sitting with a process known as Electro-desiccation, hundreds of neurofibromas can be removed in under 2 hours. An electrical current is used to desiccate or dry out and kill the neurofibroma tissue — a far less invasive technique than the traditional surgical removal method that’s said to usually be painless.
The procedure is quickly performed on an out-patient basis — local anesthetic can be used for the entire front or back surface of a patient in 1 to 2 hours, but a general anesthetic is needed for removals over a larger area of skin.
There is no need for sutures. A scab forms in the cauterized area which falls off in a few weeks revealing new skin. As with all scabs, some scarring occurs which will typically fade away over time with the exception of some rare instances of keloid (red raised scar) or hypertrophic (abnormally large) scars.
Removal of bumps is not considered merely a cosmetic procedure, but necessary surgery due to the fact that the lesions have the potential to become malignant.
It is imperative that you provide your insurance company with the specific codes from the surgeon so that you qualify for coverage.
“They [neurofibromas] are associated with pain and discomfort, and they have a certain malignant potential. They can get larger, they are disfiguring.” says Dr. Weinberg. “I think that has to be clear with the patient and the surgeon that this is not cosmetic surgery and should not fall in the realm of cosmetic surgery not covered by insurance.”
Visit Dr. Weinberg’s website to learn more, where you can see before and after photos, or contact his office directly.
Very special thanks to my friend Linda who is an active member with the CTF for informing me of this surgeon and his website.
What would you do if afflicted with this disease? As the old adage goes, if you haven’t anything nice to say, don’t say anything at all. Please be kind and place yourself in their shoes for a moment before commenting.
For More Information about this disease, visit Children’s Tumor Foundation and Neurofibromatosis Inc.
Sources: KOMO News, News AU, FOX News, Metro and Wikipedia
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If affected with the disease, well just accept the fact you have that kind of face. And it’s not your fault for acquiring that disease. Seek for some medical treatments or whatever possible way that could lessen.
Oh gosh that’s so sad
What strikes me the most about several of these images are not the deformaties, but the smiles. These people have every reason in the world to be depressed, yet they seem to be happy and that is a true inspiration.
dang… that is sad. i cant even imagine how life would be having to live like that :/
That is a very touching story — I am especially inspired by the story of Joseph Merrick — that he so much accepted by the society he moves in, and that strangers and his company are willing to help. I do hope that he gets the medical help that he needs. It is a human triumph if he gets healed and finally lives a normal life.
one of the best posts ever – moving and thoughtful
Modern Day Elephant Man Heroes | Deliggit.com…
\r\nJoseph Merrick ? known as the Elephant man ? shocked the world in the 1800s…
[...] Also check out: Life in the Fast Lane’s post about Modern Day Elephant Man Heroes [...]
Hello,
I know a person that works in a store near me that appears to have a severe form of elephantitis.
What is the best way to approach such a person to offer friendship?
When I see her I am not sure what to do exactly.
I applaud her because she works in a very busy drugstore and she works out on the floor.
Thanks
The greedy people, specially in politics, deserve that disease and not these men who were living an inspired life.
The world is truly unfair, but these guys refuse to feel that way, making them more inspirational.
Beauty exists only in the eye of the beholder … These are still people… they are beautiful … and like people, in the end we all die…
does anyone know what Eddie is doing now? I found his story so inspirational i almost started to cry. A true hero.
[...] of a girl and a very creepy pencil. Watch early in the day so it won’t give you nightmares. * Neurofibromatosis was one of the disorders suffered by Joseph Merrick, the Elephant Man. Meet four other people who [...]
NF doesn’t just affect the Schwann cells, it also affects the glial cells, mainly the optic glial cells; children with NF frequently have optic glioma. Adults have a higher risk for gliomas much like the type that Ted Kennedy has.
NF type 1 is caused by deletions of parts of the gene responsible for a ras-modulating protein called neurofibromin. This causes the protein to have defects and thus be of a lower quality in modulating the cell growth agent called ras. This in turn causes the “insulation” of brain and nerve cells (which include Schwann cells and glial cells) to grow too thick.
NF Type 2 is similar in its malformation of a Schwann cell growth regulator, but that regulator focuses on Schwann cells in the central nervous system and the areas responsible for hearing.
As someone with NF (type 1) I must say that I’m a bit annoyed by some of these comments (and some of the copy in that Fox News story). The “colored spots on the skin” are known as “cafe au lait” spots; they’re birthmark-like patches that look like *gasp* cafe au lait. The way that story’s written they sound like some hideous and amazing thing.
There are plenty of us who have NF and don’t look in an “OHMYGODTHATSHORRIBLE” sort of way. Even so, things can hurt like hell and we can have a ton of inconveniences (like, say…epilepsy which I recently developed).
If you live in the US, write to your Representative and both of your Senators and ask them to support the Department of Defense Congressionally Directed Medical Research Program for Neurofibromatosis (http://cdmrp.army.mil/nfrp/default.htm). This program also has potential to help with a host of brain tumor issues (including the type of tumor that Senator Ted Kennedy was diagnosed with) and many different types of cancer. For fiscal year 2008, the NF Research Program only got $8 million. Let’s get it back up to $20 million; otherwise, we’re seriously short-changing a program that provides hope for many people who have none.
Hi Klaba,
The best way to approach her is to treat her the same as any other good human being. You can start by simply smiling and saying hello
William, I was not able to find anything out more than what was written here about Eddie, unfortunately. They are all very much heroes in my opinion
Josh, thanks so much for your insightful comment, taking the time to inform, and providing the link. $8 million is a pittance for so many who are inflicted with this condition.
That’s why we want to get the funding back up to $20 million.
In my case, NF has caused a tumor on my nose that basically looks like a mole or pimple, except that it’s the same colour as my skin; that makes it hard as hell for others to notice it. It also caused a mild deformity in my right humerus, pain in some of my joints (helpng me see things in a Gregory House-ish way, ha ha), and most recently seizures that have disrupted my life.
Josh, that is very scary. BUT, there could be some help for you … I’ve just updated this article with information provided to me by a friend about a surgical procedure available by Dr. Hubert Weinberg. Try contacting his office, you might be able to be rid of your pain and the seizures it’s causing you. The link is above, near the bottom of this article for ‘Help for Sufferers of Neurofibromatosis.’ My best wishes to you.
Thanks for making it possible to get this on the Front Page of Digg. As I’ve shared with you on Digg, I too, have this disorder. I like the way Josh phrased it. I don’t have it in an ‘OHMYGODTHATSHORRIBLE’ sort of way.
Mine is slightly noticeable, and has had more of an impact on me internally, then externally. Like Josh, my dad suffered from seizures for years, before undergoing an experimental brain surgery that stopped him from having seizures. Both my dad and my younger sister has NF. I supposed, apart from my dad’s seizures, that it’s affected me the worst. Bumpwise, I have a bit more than my sister, who has it really mild. My dad’s bumps are minimal, and with a man’s skin being more rugged, aren’t as noticeable. However… if you were to pass me by on the street, you would not get a severe case of whiplash!
This is for Josh. If you’re looking for support, join the CTF.org bulletin board community. It’s a great place for information and support. I never would’ve found out about Dr. Weinberg, had it not been for the CTF bb.
Great article!
Thanks so much for being so helpful, Linda. With so little available by way of information on this disorder, you have shed the light in more ways than you likely realize.
From what you’ve told me, the CTF.org bulletin board is an excellent means of keeping in the know and finding support from others who have had to deal with NF.
It never ceases to amaze me, what the human spirit is capable of achieving. It certainly helps to keep my own perspective, when I see the hurdles that others have to overcome. Excuses are often just a disguise for our own shortcomings.
[...] to Google Latest Content Modern Day Elephant Man Heroes – 8 days ago Joseph Merrick — known as the Elephant man — shocked the world in the [...]
I can say that those people show what true fortitude is. Most of us so called normal people complain when we get a blemish. Try walking a mile in their shoes.
Cheers.
Thanks Rob, exactly.
Hi, my mom has neurofibromatosis and I would like to know if I would get it. I am 19 years of age and I think I have no symptoms of it. I also have a sister who is 16 yrs and also do not have any symptoms. My mom got it when she was in her late twenties and none of her family which I think has it. Do you think I would get it? I really don’t want to get it. People discriminate my mom and I don’t want people to discriminate me to. I want to lead a normal healthy life. What do you think? Do you think I would get it? Thank you for your reply.
Avi, I would THINK that you would have had symptoms by now to know. As far as I know, it’s not something that materializes later in life, you either have it or you don’t. According to the information I’ve read, a child has a 50% chance of inheriting it from their parents if one of them is inflicted with it. But many have it and are not aware. It does not always affect people severely enough to show major symptoms.
I would suggest that you join the CTF.org bulletin board community as Linda mentioned in comments here. It seems to be a very supportive community where you can find out a lot more about this condition.
Wow! It warms my heart. When I see the kind comments here. What helps are people like I see here. I have grown a lot in the past year. I have learn that I too have to give others a chance to learn who I am. Most people do understand when they get to know who Reggie is. Life is Good. I thank God for each day I have here. I’m happy that I have met hundreds of other people that have NF as well. A great source of support.
Hi Reggie, so nice to hear from you, thanks for dropping by
I’m very happy to hear that you are enjoying life and meeting some wonderful people. The CTF board appears to be a great source of support as well for which Linda thankfully pointed me in their direction.
Perhaps this is another disability and worst disorder by nature. I am scared to see all that but happy to see that there is someone to spread it.
Very good that they are able to live among the community
[...] [...]
James O’ Neal’s story is a great source of inspiration for us regular people who are looking to make a mark on the world but let little obstacles hinder us. If you really put your mind to it, anything is possible, even when you have a condition like this.
Very interesting and moving post. As others have said its amazing how people deal with horrific situations which others would not be able to cope with.
they all ar special & unique..we have to give them a moral support..
This blog really impressed. You can make a mark on the world even if you have a condition like this. Hats off to these courageous people. I know many people who always complain about the things which he don’t have not realizing the things which he have and giving full efforts to count it the most.
[...] Modern Day Elephant Man Heroes fastfastlane – member blog: Life in the Fast Lane created 15 hours, 52 minutes ago tags: bizarre disease eddie newton elephant man huang chuncai james oneal joseph merrick neurofibromas neurofibromatosis odd offbeat news reggie bibbs unusual [edit] Comments: BZ: add comment ↓dump [...]
I am amazed by the strength of these people. I believe they are living miracles.
My cousin had it. He inherited it from his dad. His father had lumps grow on the outside where Chris had the growths both inside and out. He passed away yesterday. Only 34, newly married and two little kids (who I pray don’t inherit it). He had a tumor growing rapidly on his spine that turned cancerous. I don’t know if the tumor was part of his condition but I suspect it was. He wasn’t sick long at least.
He was a sweetheart. One of the most innocent and undeserving people I know. He’ll be missed.
i am 35 yrs old and have neurofibromatosis so does my 15 yr old daughter
my oldest daughter 18 does not have it
i have went through 13 surgeries for removal of the tumors which are on my spine and throughout my body they had to remove a spinal disc from my neck and put in a steel plate
i saw EDDIE NEWTON on cable special and it got me i do not have it as bad as he does and i wanted to thank him
i know that hormones play a big part in this as any hormonal change makes the tumors grow
be it puberty,a womans menstral cycle each month,pregnancy,giving birth,and menopause
my 15 yr old has had 1 surgery thus far and i worry bout her i am homeschooling her as a result of it and her having adhd it is easier for her to learn as the school said she was lazy and such truth is she cannot understand alot of the lessons
If anyone on here knows Eddy Newton, please pass this along to him.
Eddy Newton
written by Sherry May
If I tell you this, you’ll have to understand.
This wasn’t expected, nor any of it planned.
Even I can’t believe it.
My heart had long been turned to stone.
And you relieved it.
And there’s no way could have known.
I haven’t met you, and you’ve no clue that I exist.
Unless God told you, as that is on my prayer list.
You may not want this, or think of things that way.
But I’m telling you I do. Every minute. Every day.
I so want to hold you, and get lost in your embrace.
And I want to kiss you and to see you face to face.
The paths we’ve both taken, have led to this I suspect.
Everyone that has hurt me, I suddenly thank for their reject.
And I know now for certain, there was nothing to protect.
And I know now for certain, that it’s time to be direct,
That not only I love you, but you’re the first man I respect.
I want you in my life, but don’t know how to find you.
How can I miss you? It makes no sense…I just do.
So I’m putting this out there, in the hope that it will find you.
And until it does, I hope someone will remind you…
You’re beautiful.
Anita, it sounds as though you’ve had some very precarious surgeries, considering they’re operating so near to your spine and such.
I had no idea that hormones played such a major role. As mentioned above and recommended by a friend who has this affliction as well, the CTF.org bulletin board community is a great source of support which I would recommend looking into if you haven’t already.
My bests to you and your family.
sdmay, very lovely poem, thanks for sharing
It’s been a while since I’ve seen this. One point about the removal of the tumors: the general guidance is still NOT to remove them until they have become a problem. That’s because there’s still no fully-agreed way of removing the entirety of the tissue; without that, they can recur with scar tissue making them more of a problem.
Also, kudos on including schwannomatis as it’s so new of a category that there are medical text books that don’t mention it yet.
One point on the severity of NF is that it’s not just dependent on hormones, but also on genes that haven’t yet been definitively explored (e.g. mitochondrial DNA).
This is the first I saw this kind of people. All I know is elephantiasis where the legs get big. I think Filariasis is the general term for this. Correct me if I’m mistaken.
I am a 51 year olf woman born with Neurofibromatosis Type 1.
I sadly have a severe case of this disease.
My entire body is covered with Tumors from head to toe.
I have atleast 20 brown cafe aulait birthmarks.
I have dozens and dozens of spinal tumors and leaking spinal fluid.
The Pain I suffer is Horrible. Not even Morphine helps to controll my horrible pain.
I also have brain tumors that unfortunatly no doctor wants to even attempt to try to remove for fear of killing me or causing me severe brain damage. The headaches I have from these hurt so bad.
I have a massive Plexiform Tumor in back of my left upper thigh and it grew to the surface of the skin in 1991 and ate a hole in my leg causing an open would.
This hole remained open for 15 long years and would not heal at all.
It even got so bad at one time it began hemmoraghing and I lost over a pint of blood and had to be rushed to the Hospital’s ER Dept.
I even tried 10 scessions of Hyperbaric chamber therapy to get the open wound to heal. Sadly it didn’t help.
I have been at risk of amputation for fear it would get dangerously infected and have gangreen set in.
Out of the clear blue in 2005 the wound (Tumor) started to close it self shut. And to this date December 2008 is still closed.
But the sheer pain that radiates out of that area is unbearable.
I am in so much pain all of the time.
Even walking is almost impossible anymore. I fall alot.
Neurobibromatosis is a Horrible disease to live with.
God Bless all of you who suffer from this disease.
I just saw Eddie on a Discovery Home & Health program and…God,i cried…he´s just a brave man and i started looking for information and found this. I´m amazaed by the way people live with this decease, they are really people to look up to…real role models.
I hope they´re all okay.
By the way, does anyone know how to contact Eddie? He doesn´t have a site or anything like that…
Congratulations to Reggie for his campaign!!!
Love & hugs from Mexico
Cecillia, I did the same thing. His story and courage definitely had the power to move me. I think he is fanscinating, and he is so well spoken he seems highly intelligent. His confidence is inspiring and I want so badly to tell him what an inspiration he is. I searched the internet high and low to find contact information, but to no avail. What little information I could scrounge up leads me to believe he lives in California. Also, that whole segment about him is on YouTube if you ever want to watch it again. He gets in your head. I watch it when I’m lonely and feeling sorry for myself. I wish I could be more like him. There is something about him and I can’t quite put my finger on it, but he makes me want to give him big, huge, honkin’ bear hug. I suspect I would feel very at home there.
Sherry
Almost forgot, here’s the youtube link:
http://www.youtube.com/watch?v=2iNgqdNzpxo
Glenda, my heart aches for you and what you have to live with. I wish there were some answers to help you. At the very least, you can get support from others who suffer your plight at the CTF.org bulletin board community. Perhaps there may even be some answers to help you in some way. The link is at the very bottom of this article for Children’s Tumor Foundation.
Cecelia, I’m sorry, I’ve run across a block as well to be able to find contact information for Edie.
Edie Newton is an incredible inspiration, sdmay. Thanks for posting the link to the video, but the identical video is actually embedded above
We have an update for James O’Neal who recently underwent facial surgery within this article, but we’re having a temporary glitch that won’t publish the update in this post. Hope fully this will be fixed promptly.
Deborah , I Have been a member of CTF.org for many years.
Yes they are quite helpfull.
The storys are sad and heart breaking.
I have distanced myself from this website as there is alot of
rude bickering that flys back and forth between alot of the members.
Living with Neurofibromatosis for 51 years has taken a hard toll on me and my fragile health.
This is a horrible disease. God Bless those who suffer with this illness.
My heart aches for you Glenda. Many others likely feel the same as I, it’s terrible when we can’t do anything to help someone’s situation or lighten the load that’s obviously extremely difficult to bear.
Thankfully in Jame’s O’Neal’s case, those who contributed to his cause were actually able to help him to receive the operation he had last month. I was one of the contributors, so it gives some sense of being able to help someone with this infliction at least. We’ve finally managed to get the update to appear for his story.
I’m sorry to hear that there are difficulties amongst members where it should actually be a haven of support. The internet is full of every kind of walk of life, and sadly, some ruin things for others. No doubt some are bitter for having to live with such ongoing pain and misplace that anger towards others.
[...] Modern Day Elephant Man Heroes [...]
I have more devestating information to add to my post.
On January 5th. I was sent for a chest Cat Scan because of a bad 3 and 1/2 month long cough and bad left sided chest pain.
The Chest Cat Scan shows I have a Neurofibroma Tumor InSide the bottom portion of my Left Lung , and that the top portion of it has alot of Scar damage.
I am being sent to a Pulminory Lung Doctor soon to see if anything Can , or should be done for my situation.
Please say a small Prayer for me. This is so devestating.
Hi Glenda,
I am so sorry to hear your tragic news. You’re in my prayers for your health and strength, my best wishes for you. Please keep us posted, and take good care dawlin.
Beauty is on the inside. All these people are more beautiful that most people we encounter on a daily basis.
Hello to everyone , I have been under going mild surgerys to remove painfull tumors from under my scalp.
Boy does that hurt when they numb your head (scalp ).
And boy does it hurt when they cut your scalp open.
Then stitching it is bad too.
The aftermath pain is dreadfull.
Call me a light weight I guess. I just don’t tollerate things well.
Update about my lung tumor , the Pulminory doctor said to leave it alone. No surgery. That would inflict too much pain on my already sore lung.
I am having a real serious problem with Insomnia.
Probably due to being in pain all the time and not being comfortable in bed when I lay down.
I sure am tired.
It’s 1:30 am right now. Thought I would stop by to say HI since I can’t sleep.
oh my good, it’s that really happen that’s is so sad
with all my respect i hope be strong to revetment live
Ohh my god! I really didn’t even see this so far.I have seen some persons legs are like elephant legs.But face I didn’t see.Hope they will get cure soon.
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Hi there:
I write all the way from Perth, Australia. I have Neurofibromotis Type 1 and have been very very fortunate to not have it to such an extreme as to what I have read here. I had a malignant nerve sheath swanoma on my right leg removed 3 years ago. For 18 months, I was in a huge anount og pain that no medicaine either natural or man made could even dent. I nearly lost my leg, I was so ill and underweight when they finally found the cancer that I had to spend a month in hospital to put on weight that I needed or quite simply I would not survive the operation. I still have my right leg, I have to wear a splint to ensure I can walk balanced and I have foot drop and a massive scar that goes from my buttock, all the way down to my knee, but otherwise healthy and very much alive. I have the cafe spots, the slightly larger head and a few of the raised skin coloured spots, but am extremely blessed for most of them not to be to obvious, although,that may change. I have looked on here and am so impressed byt he courage of people who are worse of and by the people who have responded in a positive and supportive manner. When you suffer from a disease, people can tell you are different, I was subject to ALOT of cruel teasing when I was younger, so it is good to see how society has grown to understand and accept people who are different, how far we have coem in such a short space of time.
I am a special ed teacher working mostly with children who have behavioral disorders as well as learning disorders. Almost every day on my way to work, I pass a young boy who walks to school. I suspect he suffers from NF, due to his facial deformaty. I had a friend who suffered with NF and she passed away at the age of 28. I have not had a close look at this young boy since I only drive by him and do not want to stare. The Lord has put a great burden on my heart for him and I pray for him every day as I drive on that street to and from work. I think I saw him come out of his house, so I pray for him and his entire family. There are times I am overcome with paim in my heart for him that I sob. I know that the Lord has put this compassion in my heart for him. I pray that if I am given the opportunity to meet him and his family that I would have the right words to say. I do not want to come on too strong or sound as if I am a stalker! maybe I am just meant to lift him up in prayer. I see him walk to school alone and it breaks my heart. I pray for friends as well as healing. He is so cute sometimes, as he skips down the street or kicks a rock without a care in the world. I pray that no one ridicules him. He is a precious child and I am blessed to know of him. Please join me in my prayer for him. I live in Caldwell NJ and he lives there too, just in case anyone reading this knows of him.
A note to Glenda. If you are still out there, I am lifting you up in prayer as well. My frined, Denise, would have been about your age if she hadn’t gone home to be with the Lord in 1987. If I hadn’t have known her, I would not know so much about NF and checked out this site today. She had such childlike faith and I know she is with the Lord now. When she died, she looked up and smiled in the halfway she had of smiling since surgery had cut nerve endings to the side of her face. I know that she saw the face of Jesus calling her home.
My prayers to all who suffer with NF.
Sincerely, Phyllis
YALL talkn tru stuff yo NF iz serious bro
YALL talkn tru stuff yo NF iz serious bro
YALL KNO W@T NF iz SErious because it isreally scary mAN u r some people @lW@YS thynk stuff is agame is not it nat funny yo R3@lly
Well to let yall kno i live in GVILLE florida and I am in the 12 grrade duces
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This makes me feel so blessed. Thank you God and please help these poor people that are suffering. I really feel for them