Awareness of our condition .....

[bill-uk]

6 months ago or more, 'Lucy' came on this site and explanined that she was making a TV programme about our HH condition. Some of you you may remember. At the time I responded to her, saying that I would be happy to give her information about how HH affects us but I wouldn't be happy to appear in any programme personally. Well that all faded out as the money ran out for the programme.

Today, 6 months later, I received the following email from one of her colleagues at RAW television:

Hello Bill,

My name’s Jonathan, and I work at Raw Television. You very kindly corresponded with Lucy Cohen who was developing a Hyperhidrosis film back in November. Lucy has now moved on to pastures new (i.e. a new job) and I’ve inherited her research and contact list – hence my mail to you.

I just thought I’d update on the progress we’ve made with the documentary. Unfortunately Channel 4, who were the ones to initially express interest in the film, decided not to pursue it further. This was obviously a blow to us and all the people who wanted to tell their story, but such is the world of TV!

Luckily, we’ve had some more interest in the film from other channels recently, and I wanted to get in contact with you to see how you were, and whether or not you’re still happy to assist Raw with the film.

I’d really appreciate having a quick chat with you about how you deal with your condition and how it affects you life. At this stage there’s absolutely no pressure to appear in the programme, and anything you say is, obviously, strictly confidential.

From my point of view, it’s easier if I call you – so may I have your number, please? – but if you’d prefer to call me then my office number is…
020 7284 XXXX

and my mobile is…
XXX XX XXX XXX

If at all possible, it would be great to have a chat at some point today, but I understand if this is too short notice.

I look forward to speaking.

Best wishes,
Jonathan


My response was as follows:

Jonathan,

Having only picked up this email tonight at 23:30 it is obviously too late to talk. As I mentioned to Lucy, I think this is a very important subject as a sufferer of the condition as you might expect and it affects every day of my life. Fortunately for me, I am married and happen to hold down a fairly responsible position and fairly well paid job despite this, but it affects every moment of every day, even if those around me don’t always see it or understand. As the summer is coming it will get worse and I look forward to September and the cooler months.

If you were to meet me in my house, I would seem a pretty normal sort of guy, I probably wouldn’t be sweating and you would wonder what the hell is the problem and whether us sufferers are making it all up. However, if you were to see me mow the lawn, put up a cabinet, wash the car, go for a walk or eat a BBQ in hot weather you might see the sweat pouring down my face and literally dripping off my nose and chin when others around me are totally dry. I remember one day last August when I was washing up in the kitchen after a BBQ and my T shirt was totally soaked with sweat pouring down my face and I felt that life had dealt me an unfair hand. My wife and kids around me were totally dry, yet I was pouring out in litres .....

Anyway, dry tonight, and happy to talk in the conditions you mention. My home No is 01793 xxxxxx, work is 01793 xxxxxx and Mobile is 07930 xxxxxx.

Regards Bill

I await a response and will hope to deal with it in a manner that benefits us all. I will wait until I receive any response from Jonathan, but if any of you would like an input into Jonathans request, then reply below. Please mention whether you would be happy to appear or be quoted or whether you just want your experiences to be mentioned.

Until he answers, I cannot guarantee that this will go any further, but as he had contacted me then, I guess, that there is a good chance that it might ........

Regards, Bill

 

[fallenfeather]

That's great you are helping them with their research but I think you should edit your post to blank out the phone numbers asap before the poor guy ends up getting random calls and texts to his phone.

 

[Goldsickle]

I hope this makes more people aware of our problems. I'm getting tired of all the ignorant people telling me to wear latex gloves for the rest of my life.

 

[bill-uk]

That's great you are helping them with their research but I think you should edit your post to blank out the phone numbers asap before the poor guy ends up getting random calls and texts to his phone.

Done ....

 

[bill-uk]

I hope this makes more people aware of our problems. I'm getting tired of all the ignorant people telling me to wear latex gloves for the rest of my life.

:lol:

I forgot about this tv production thing, doesn't seem like 6 months ago at all. I think a lot of people including me would be happy to imput some stuff and jot down a few experiences on here but i'm not too keen on phoning him up tbh. I think i'd find it kinda awkward talking about it personally but if other people have the courage it can only help.

Pinker, if there is anyone on these boards who can make a difference then it is you. I have been on and off this board for 2 years and in this time you have constantly posted positive information in aid of fellow sufferers. If anyone can make a difference then it is you with your knowledge and expertise about our problems and their possible solutions.

I would go as far as to say that any solutions would be void until thay had received your personal agreement because from what I have read over a 2 year period, it tells me that you are best positioned to answer on behalf of the rest of us.

I also understand that you are only aged 18/19 or so and that I am aged 46 years old. I still regard you as the expert in this condition and i would be happy to follow your lead in this instance.

 

[**removed**]

Hey bill, thanks for the kind words

But I don't want to take any glory from what i've wrote or who I might have helped in some way. I post on these forums just to in some way help fellow sufferers with what they're going through because we're all in the same boat and I know it can seem like a helpless cause sometimes. Couple this with a lot of free time and a slight addiction to the internet and voila!

A lot of the remedies (virtually all of them) i've noted down in the sticky thread have come from what people have talked about or have recommended on this and other forums, I aimed to write them all in one place that was easy to refer to. I definitely don't want to take any personal credit for it because I just see it as shared knowledge.. I should write that down at the start of the thread really.

Anyway what I want to say is everyone's imput on here is equal, and there are many people on the few forums we have and in particular the ETS and reversals forum who have a great knowledge of hyperhidrosis and even the human body, and certainly have a lot of experiences to share. It's just a case of reaching out to them I guess.

 

[grissom]

reply

I remember Lucy's post on here, wow it's really been that long ago? I emailed her and PM'd her on this forum but she didn't reply to either. I guessed that the Company had just stopped with the production or something and I didn't bother to email her again. I'm surprised that 'Jonathan' has not emailed me, but maybe it went into my junk email. I was glad to give them any info on the condition because I love these documentaries on health that are usually on Channel 4, I seriously can't get enough of them. I didn't want to appear on them cos I'm so self conscious and I haven't told anyone about my condition (seriously... no one!) but now I really don't care about not going on them. This is me and I can't escape being me so I shouldn't worry about people knowing I have this condition. Anyway, let us all know about any replies from Jonathan won't you Bill??
PS Thanks for posting this, I was wondering where that Lucy woman had gone to...

 

[bill-uk]

Hi all,

a few days have passed since jonathan emailed me and he has not responded to my email so far. I still hope to discuss this with him but at the end of the day it is his shout. I emailed him again yesterday as follows:

Jonathan,

I have responded to you twice and as far as I can tell you have not phoned me so far. Each of the numbers given has an answer phone and no messages have been left. Whilst I would like to help, it has to be a two way street. If you would like to discuss then please contact me on the numbers provided. I am sure that you are a busy man, but then so am I. If it is all too difficult, then please let me know. I may be a long suffering victim of HH, but I also have a full and fruitful life to lead. I have left messages on the socialphobiaworld website mentioning that you had contacted me and asking for their help, but I do not want to let these people down by false promises. Let me know either way.

Regards, Bill

 

[bill-uk]

Hi all,

Jonathan actually did phone me yesterday at work in London, he apologised for not coming back sooner, and we had a brief 5 minute chat about how it is for me to be a HH sufferer. I had to ring off due to work commitments but he promised to ring me at home tonight at 21:30.

Well here we are today, nearly 1 hour after the expected phone call and he hasn't phoned back.

Keep you posted, but now expecting this to fizzle out yet again .... apologies to all if I raised your hopes in vain.

 

[darknight]

I'll tell you my stories ......


There was an incident where one day I was in church and I had on a teal blouse. i was like ok I've worn it before no problem right/ But By the end of church you could see that i had sweated through my shirt. i was so mad. i haven't reworn that shirt. LOL

Another time i was taking my SAT test and I was wearing a navy a black t-shirt and a navy one on top. I was thinking to myself I'm not going to sweat through my shirt through out the test. i hadn't even gotten up to take a break when we had one. By the time the test ended I had sweated through my shirt's noone had said anything to me. I was so upset becsause the test is like 3hrs long and I get really nervous. Crying or Very sad Lucky me I always come prepared and had brought another shirt in my bag. Very Happy

This ones the worst. I recently was in a local competiotion in April that lasted 5 days. We had to dress in dressy clothes a white blouse and black or navy pants with dressy shoes. So one night when my group and I were in the ballroom I always get nervous. I was already upset because the meeting lasted like an hour or hour and a half. This was the award ceromony and the room is packed with like 14 other groups from different distircts. So one group that got up got their award and then the walk in my groups direction because we were sitting in the second row on the left side of the room near the enterance doors. I was sitting at the end nearest to the doors. They were walking as calmly as possible.... and then ran like a stampeed of elephants as the passed my row... Crying or Very sad I didn't think it was funny at alll! I just wanted to run and get out of there. but I stayed in my seat calmly. They were told not to run. and The other competitors started to make gestures because the had a big screen which showed them while they stood to take the pictures in a group for everyone to see. I was so angry. I thought to myself"This isn't happening to me. " Later on after I got back to my room I cried. I'm just glad the competiotion is over..... Very Happy Crying or Very sad

Were you shocked by my story..... Shocked Very Happy

We should rate them at the end to sees who's was the best... But you shouldn't be able to rate your own...
_________________
darknight

 

[darknight]

I'll tell you my stories ......


There was an incident where one day I was in church and I had on a teal blouse. i was like ok I've worn it before no problem right/ But By the end of church you could see that i had sweated through my shirt. i was so mad. i haven't reworn that shirt. LOL

Another time i was taking my SAT test and I was wearing a navy a black t-shirt and a navy one on top. I was thinking to myself I'm not going to sweat through my shirt through out the test. i hadn't even gotten up to take a break when we had one. By the time the test ended I had sweated through my shirt's noone had said anything to me. I was so upset becsause the test is like 3hrs long and I get really nervous. Crying or Very sad Lucky me I always come prepared and had brought another shirt in my bag. Very Happy

This ones the worst. I recently was in a local competiotion in April that lasted 5 days. We had to dress in dressy clothes a white blouse and black or navy pants with dressy shoes. So one night when my group and I were in the ballroom I always get nervous. I was already upset because the meeting lasted like an hour or hour and a half. This was the award ceromony and the room is packed with like 14 other groups from different distircts. So one group that got up got their award and then the walk in my groups direction because we were sitting in the second row on the left side of the room near the enterance doors. I was sitting at the end nearest to the doors. They were walking as calmly as possible.... and then ran like a stampeed of elephants as the passed my row... Crying or Very sad I didn't think it was funny at alll! I just wanted to run and get out of there. but I stayed in my seat calmly. They were told not to run. and The other competitors started to make gestures because the had a big screen which showed them while they stood to take the pictures in a group for everyone to see. I was so angry. I thought to myself"This isn't happening to me. " Later on after I got back to my room I cried. I'm just glad the competiotion is over..... Very Happy Crying or Very sad

Were you shocked by my story..... Shocked Very Happy

We should rate them at the end to sees who's was the best... But you shouldn't be able to rate your own...
_________________
darknight

 

[bill-uk]

I have now spoke to Jonathan from RAW TV on 2 occasions and we have emailed each other twice.

Things are now clearer.

Jonathan is totally committed to making a programme about our condition, of that I have no doubt and my earlier scepticism was totally unfounded. He has repeatedly come back to me with responses to my questions etc.

However, Channel 5 is now suggesting that he focuses on HH in women. So whilst I have now given him my own experiences of my life living with this, he needs to contact some of our female posters out there who suffer from this. I understand that this will be very difficult for our female posters, but this is a chance to make a difference.

I see darknight has posted earlier and I guess that this is a female poster, Alina has also posted here before as have a few others.

Jonathan is happy to take experiences from anyone, male or female at this time to help him make the programme, so you guys out there should take notice. The male replies will help him to balance the picture.

If any of you would like to help in this, then either reply below or send me a personal email which I will forward to him.

As I have said to Jonathan, we may all moan about this condition, but if none of us is willing to come forward and recount our experiences, then we cannot blame people for not understanding what we are going through. It's up to us ........ Posters outside of the UK are welcome to contribute ...

Bill

 

[Alvinsduckie]

.

wonder if ETS will be discussed?

thanks for the info--keep us posted!

 

[bill-uk]

Yes, he is interested in ETS, those of us who have had it and those of us have haven't and why we haven't. He has spoken to some people who have had the surgery and was interested to know why I had rejected the idea of it.

Come on people, let me know if you are willing to talk to him on or off the record. He is a genuinely nice guy and made me feel at ease immediately. As i said before, this is our chance to make a difference and let our story be heard. Are any of you out there ready to talk about it ?

If so, as I said, post below or email me and I will give you his telephone number.

Bill, (a sweaty cranial sufferer who is just starting to experience what the summer months can do, yet again ! )

 

[bill-uk]

Hey bill, looks like things are moving along with it now

Here's a similar thread to this one to get some support - http://www.esfbchannel.com/forum/index.html

Thanks Pinker, I was thinking about posting on that forum myself. I am desperately trying to drum up support for this as you well know. I have given Jonathan many of my experiences already but he needs to know others, so all help is appreciated ....

 

[bill-uk]

Hi, not been on here for a while. Just thought I would post an update fron Jonathan from RAW TV regarding a programme about our condition. this is what he says:

Dear Bill,


How are you? This is just a quick email to let you know that we’ve delivered the hyperhidrosis development package to Channel 5 today, so we’ll be crossing our fingers from now on!

I also wanted to say that this project certainly wouldn’t have got this far without the help and input from people like yourself, so both Jo and myself (and our Executive Producer, Lucy) would like to extend our heartfelt thanks. Lucy is off to visit 5 on Wednesday of next week, so if there’s any news from her meeting I’ll let you know then, but in all likelihood it’ll probably be a couple of weeks before we hear back.

Please do get in touch if there are any matters you would like to discuss with me – I’m still free to talk about the film anytime.


Very best wishes,
Jonathan