In a moving and thought-provoking film China's "Elephant Man", Huang Chuncai, tells his extraordinary story as he undergoes surgery to remove tumours, weighing 20kg, that have caused him a lifetime of suffering and are threatening his life. As a small child Huang developed a swelling on the side of his face, but at the age of 31, the relentless growth of the tumours has destroyed his features and wracked his body: they make up half his body weight.
I have sent this e mail to the film company September Films, that made the elephant man programme as I knew that a lot of it was misleading.
Thank you for inviting me to respond to your film I am The Elephant Man, after i objected to all the misleading and false information i saw in the papers about the film. After seeing the film i object to even more of the information provided; on the same grounds. The times and the Daily Mail blatantly linked the condition neurofibromatosis with the elephant man syndrome which neither your film or the papers managed to explain it is actually called Proteus syndrome. When I phoned the Mail I was told they had no idea they were separate conditions and so my conclusion is that they were misled and ignorant of what they were printing. September films was not ignorant of the facts and chose to lead the format is such a way because it is eye-catching, and did not worry that it was misleading.
If the Neurofibromatosis society had known in advance that misleading information was being given out we would have all objected; since NF is bad enough on its own without being linked to elephant man syndrome.......AND THAT is exactly what your programme did it frightened a teenager with NF into thinking she was going to get elephant man syndrome. We want NF to be known about; it is as common as systic fibrosis which most people know of, but not linking it to the original elephant man Joseph Merrick or Proteus syndrome. The programme did not make things clear and tell viewers new to either condition that the two are completely separate, I feel you had a duty of care to Huang Chuncai and all sufferers that that is the case. I feel sure anyone having watched that programme will now think with those inaccuracies.
Also misleading was the impression given that poor Huang was the worst case ; NO HE IS NOT THE WORST AND YOU SHOULD HAVE LET VIEWERS KNOW THAT NOT EVERYONE WITH NF GETS THAT BAD it is just he was left so long with no treatment , in a very poor and ignorant enviroment. People with symptoms in this country are regularly treated and operated on to good effect; and so again unfortunately you could have easily frightened anyone watching who was newly diagnosed with the problem. A feature of NF is that it is so variable and frightening when described by a doctor due to all its horrors and seriousness that the NF society have trained councillors... I have also noted that I was not the only one to comment on the channel 4 response site that it would have been nice to know how Huang gets on and why someone did not get the poor man to a more experienced NF expert doctor and surgeon.
It was also quite obvious that Huang's mother had NF, a point that should have been picked up on as the condition can be passed on...another important fact overlooked by the programme and should have informed viewers.
April 16th - 6:18pmJames said...
I was deeply moved by this. A couple of things though, how much money did C4 give the people for this footage? I hope it was enough to drastically change their lives. Also It would have been better to hang onto the series for a while so we could see the outcome of the treatments.
Wishing them all well.
April 14th - 1:30pmDawn Ballard said...
I watched the repeat programme on More 4 last night which did forewarn viewers re slaughter of pig. I found Huang's story really moving and equally couldn't believe his condition given modern day medicine miracles. Having children myself, I really pitied his poor mother, it must be heartbreaking for his parents to feel that they can't do anything to help their son. Huang's story has made me think about a few things too, and I'm desperate to learn of a happy ending for him and his family. When will there be a follow up programme?
April 14th - 2:25amalison said...
I cant believe the first operation would only take 2 hours, why wasnt it done before?? I wish him all the best of luck, and i dont wish any one to suffer the same fate as this poor young man, God Bless xx
April 13th - 11:14pmJames said...
I was very touched not just by his plight but what a wonderful caring family he has, his family are so close. His mothers tears for her son after the operation made me cry and his brother who cared so much for him. They are an example to us all how caring for each other and wanting only health over the material things most modern families crave.
April 11th - 8:01pmjulie said...
I cannot understand the point of showing a pig being slaughtered on the "I am the elephant man programme" what was the relevance to the plight of Huang?? It was very very upsetting, and discourages me from watching other "bodyshock" programmes.
April 11th - 2:19pmToni said...
This programme has really upset me, infact it made me physically sick, not just for poor Huang's plight, but I am really cross that no warning was given to the fact that they would show that poor pig being slaughtered without being humanely stunnd first.
The only warning given was that there would be scenes of the operation on Huang, which for most viewer's they don't have a problem with.
Can we please have warnings of animal cruelty before the programme starts.
April 10th - 3:48pmLizzie said...
Amazing story of unnecessary human suffering! Why was something not done before? I realise they are a poor country, but we have charities and aid - where does our money go???? Need to know what happened to him, did he get his second op? How is he?
April 10th - 2:50pmGloria Wilkinson said...
I found this such a sad story that the doctors had neglected to deal with this poor man when he was a child. Then when the doctors said it would only take 2 hours I was appalled. And to admit they had never dealt with anything like this, I was certain the poor man was going to die. They were more like butchers than doctors and I pity him for the next operation. I can only hope a "civilized country" has doctor prepared to take on such a tragic case and help this man properly.
April 10th - 2:43amAtti said...
I've seen it, he made it after the first operation but bleeding quite badly afterwards which made me so worried that he wouldnt make it! By the end of the programme he was fine the size of his head was dramatically changed and i think he just had another operation in January or something but dont know about the outcome. A very touching programme i cried not because of the pity its because i dont htink anyone out there could have the human will-power and strength like Huang and his family. It made me felt that i dont need a super talented child i just want a healthy normal child. Thats all i hoping for. Bless Huang and wish him & his family all the best.
April 9th - 7:06pmliz park said...
we would love to see the follow up story x how is he x
April 9th - 11:47amRobert Preedy said...
This was the most shocking programme i have ever seen. I can't believe people have to suffer like this in 2008. He was an inspiration to everyone, if i was wealthy i would have travelled there asap to help him and his family as no one should have to suffer like this. I would really like a follow up programme, so many unanswered questions. A charity would be great also, perhaps the programme could think of setting this up for all episodes in the future.
April 8th - 9:59pmDonia Taylor said...
God, we must all learn from this programme that we are so lucky to be healthy and not be frowned upon for being 'different'. I thank God for my health so much more now having seen the emotional, spiritual but most of all the physical pain Huang went through.
April 8th - 6:53pmdonald mcleod said...
how can we help ,is there a charity or can we start one?
April 8th - 4:45pmsivaram said...
hi how are you are so different but you are the same as us
April 8th - 4:33pmsara antcliff said...
Hope channel 4 have managed to do a follow-up programme. So many unanswered questions. Whats happened to Huang since,has he had another operation, is he still alive etc etc. Please let us know!
April 8th - 3:57pmChris Lascelles said...
How can we get a copy on DVD?
April 8th - 1:57pmJoan Knight said...
Has he had his 2nd operation?
April 8th - 1:20pmShabiyah Davidson said...
for so long i too had been living a recluse life in the thouhgts in my head, isolating myself from society and belittling myself and burning any chance of hope for myself cus i felt i had none,until i watch'd the elephant man.iv been so ungrateful of my life and now my opinion has dramatically changed.but i would like2know more about what happened at the following operation,what happens next
April 8th - 12:48amGareth Braganza said...
What happen to Huang Chuncai? Did he have the other side removed? It he still alive?
April 8th - 12:01amLisa said...
There but for the grace of God, i do not think i will ever shout at my kids again for not taking out their dinner plates, for leaving dirty clothes on the floor, for not cleaning their room. This programme really upset me
Documentary
Add a comment