Hyperhidrosis Support Group

 

                                      Newsletter No. 5

 

Email: info@hyperhidrosisuk.org

Newsletter Editor: steve.tribe123@btinternet.com

 

Members: 3965   You are not alone.

 

 

Welcome to newsletter no 5, it’s been a little while since the last newsletter. I’ve been busy moving, changing jobs, and perhaps worrying a bit about my own HH. So what’s new?  

 

………loads!!!!

 

The support group has a new look logo & a new look website follows, due to be more user friendly packed with more everyday info & the support group will be able to update it rather than having to wait for someone else to do it.

 

We have some new additions to the team, and those of you that use our Facebook page will have already come across them.

Hilary is helping Julie with the admin tasks involved in running the support group. We hope that Hilary will be able to stay with us, as there is more admin tasks than there is time! Megan joins us as a teen advisor. I’m beginning to feel like the token sufferer, as thankfully neither Hilary or Megan suffer, but both are welcome additions to the fight against HH.

 

In this newsletter I was hoping to bring you an update from Anne (Sweaty Betty), but Anne has just returned from the UK, due to family illness, so we wish her well. She has recently finished filming a new documentary which hopefully we’ll get to see over here soon. So read on……..   

 

Please visit the facebook page for various HH videos.

 

PLEASE, PLEASE IF YOU CHANGE YOUR E-MAIL ADDRESS DO CONTACT US SO THAT WE CAN UPDATE OUR RECORDS. THANK YOU.

 

*********STOP PRESS********

CHRIS CONNELLY – HYPNOTHERAPIST – he is based in Gravesend in Kent and is interested in knowing if hypnotherapy will help people who suffer from Hyperhidrosis. He will treat people for free if they contact him on: chris@northstar-therapy.com

 

 

UPDATE ON FUND RAISING FOR THE SUPPORT GROUP

A big thank you to everyone who so kindly sponsored Julie Halford and
Phil Peters for the Walk for Skin. Members of the Hyperhidrosis Support
Group donated over £300.00! We'll let you know the total collected in
the next news letter.

As you probably know, the Support Group helps thousands of people every
year to manage this distressing and disabling condition. Up to 15
sufferers each day contact Julie via the website, for help and advice;
many are desperate and don't know what to do or where to turn for help.
There is no charge whatsoever for this service, and the Group is run
entirely by volunteers.

Support from members, many of whose own lives have been transformed by
Julie's generous sharing of her expertise, is vital for the Group to
continue helping others.

We have now set up a permanent fund raising page at
http://www.charitygiving.co.uk/hyperhidrosis, a simple and secure way to
make a donation.

Any member who wishes to help, by organising or taking part in a fund
raising event, can set up their own fund raising page under the
Hyperhidrosis Support Group umbrella. Phil Peters did this for the Walk
for Skin this year, and raised an incredible £210 from friends and
family!

NEWS ABOUT THE WEBSITE

WE are delighted that The British Association of Dermatologists has
awarded a grant to the Support Group, to be used to update and improve
the website. We are working on this now, and the new site will be even
more informative and up to date - a great resource for Hyperhidrosis
sufferers. We'll let you know when it's up and running.

 

 

Teen Text Line

 

07967749737

 

Megan joins us, having realised that she had acquired enough knowledge about HH to recognise that a friend was secretively trying to hide her symptoms, and that she was in a position to help her with both practical advice and support. Megans knowledge has grown fast, in relation to products available, and she is being supported by the rest of the team. You will find her on the facebook page, aswell as running the text line. So if your teenager (or younger) is suffering, and would rather turn to someone their own age for advice and support, then the text line is there, with the additional medical support in the background from Julie. You will also find Megan on the Very Sweaty Betty forum as one of the Teen Forum Managers, where she is supported by Anne & Beverly (thanks guys).

 

VSB Blog

 

Those visiting the Very Sweaty Betty forum will also find regular ‘guest’ blogs from myself. I hope to be a monthly guest there. We have always worked closely with Anne & Beverly, and my thanks goes to them for their continued help and welcome to both myself and Megan on their pages.

 

Julie continues to put pen to paper:

MEDICAL ARTICLES JULIE HAS WRITTEN ON HYPERHIDROSIS SINCE THE LAST NEWSLETTER:

 

INTERNATIONAL THERAPIST (FEDERATION OF HOLISTIC THERAPISTS) JULY/AUGUST 2009

 

HYPERHIDROSIS

INDEPENDENT NURSE SEPTEMBER 2009

 

HYPERHIDROSIS – HOW OUR SUFFERERS COPE IN THE HEAT

COVER – BRITISH ASSOCIATION OF SKIN CAMOUFLAGE SPRING/SUMMER 2009

 

SWEATY PALMS PUT MEN OFF – THAT’S LIFE. SEPTEMBER 2009

 

NO SWEAT – NURSING STANDARD. SEPTEMBER 2009

 

 

 

 

 

 

 

 

 

 

 

So, you’ve only just discovered you have Hyperhidrosis?

 

Which Kind of Hyperhidrosis Do You Have?
So, how do you know which type of hyperhidrosis you have? And how do you know where to turn for help? Primary hyperhidrosis is a longstanding medical condition that generally begins before the age of  25. Primary hyperhidrosis can affect one or more body areas, most often the palms, armpits, soles of the feet or face and sometimes the groin, the back & the chest and under the breasts in men and women. Secondary Hyperhidrosis or diaphoresis, on the other hand, is generalized, typically involving the whole body. This type of excess sweat may seem to come on for no apparent reason – although a closer look will typically reveal a root problem. This is why this type of hyperhidrosis is called "secondary." The excess sweat is secondary to the more primary condition.   Whether you have primary or secondary hyperhidrosis can be determined by asking yourself a few questions. Ask yourself if you have experienced focal visible excess sweat for at least six months without apparent cause. If the answer is "yes," then the next step is determining whether you meet at least two of the following criteria: Your sweat is bilateral and relatively symmetrical, meaning you sweat the same amount on both sides of your body. Your excess sweat impairs your daily activities. You experience at least one episode a week. The onset of your excess sweat is earlier than age 25. You have a positive family history. (Meaning that other members of your family suffer from similar sweating problems.) You stop sweating when you're sleeping. If you meet at least two of the above criteria, chances are you have primary hyperhidrosis, and you should make an appointment with a dermatologist familiar with treatment options for people with hyperhidrosis. If you don't meet the criteria for primary hyperhidrosis, then it gets a little more complicated, as your doctor may end up needing to do a complete check up to determine why you are sweating excessively. The cause may be as simple as a new medication you've been taking. Or, you might be suffering from one of a range of medical conditions –infection, malignant disease or other medical disorders such as diabetes or gout. A hormonal imbalance related to pregnancy or menopause could be another potential root cause. For a complete list of medications and diseases that can cause excess sweat, go to "Causes of Secondary Hyperhidrosis". If you see one physician and don't get the sense that the answer given is sufficient or satisfying, you certainly may need to seek out a second opinion. Sometimes that first response is: 'Don't worry about it. It's not going to kill you.' If you get an answer like that, and it's not satisfying to you, you should go ahead and seek out another opinion.

 

Treatments

• Aluminium chloride antiperspirants (in the UK, Anhydrol Forte, Driclor, Odaban) are the first line of treatment but can cause irritation and do not work for everyone. They are sold in most chemists & on-line and are available on prescription.
• Iontophoresis (for hands, feet, and axillas) works for  85% of people using ordinary tap water. If tap water fails, then a solution can be added to the baths which is available on prescription. Failures using glycopyrronium bromide are rare. See www.iontophoresis.info  
• Botulinum toxin (for axillas) is available and in a few private clinics for other areas of the body but is often not available in NHS hospitals. It costs £300-£500 per treatment and needs to be repeated every three-six months for maximum effect.
• Anticholinergics such as oxybutynin hydrochloride and glycopyrronium bromide (prescription only) work for many patients with generalised hyperhidrosis or those who experience compensatory sweating after endoscopic thoracic sympathectomy. However, they are not without side effects
• Retrodermal curettage (for use on the axillas only) is not available in many clinics, but in two thirds of patients the effects are long lasting

 

If iontophoresis or botox are not possible, or if you suffer from Hyperhidrosis all over, perhaps badly on the head or you are suffering from compensatory sweating following an ETS prodecure, you may wish to consider the prescription drug OXYBUTYNIN MODIFIED RELEASE 10MG

 

There are only 3 doctors who do Retrodermal Curettage in the country as far as I am aware. They are based in London & York. Please see details below for Dr Christopher Rowland-Payne’s private clinic in London.

 

Mr McCleary (Vascular surgeon) does RC in York hospital on the NHS for those who live in the north and privately for anyone wishing to use private healthcare.

 

Mr Baker does RC in London at The Royal Free hospital on the NHS after one treatment of NHS Botox if successful.

 

If you would like RC done by Mr McCleary in York, please make contact with me first and I can pass on the relevant details.

 

If you wish to book a consultation with Dr Rowland-Payne, then please tell his secretary that you have Hyperhidrosis and you have been in touch with The Hyperhidrosis Support Group and they will fit you in sooner rather than later as they have a long waiting list

 

Please do let me know if you have this done on the NHS so that I can pass it on to others who need help.

 

Also, Mr Patrick Addison who is a Plastic Surgeon ( http://www.spirehealthcare.com/Edinburgh/Our-Facilities-Treatments-and-Consultants/Our-Consultants/Mr-Patrick-Addison ) in Edinburgh, performs an operation called 'Bilateral Axillae Aspiration with Lipolysis' which is an operation where some of the sweat glands are removed by aspiration, rather than by liposuction as the fat is not targeted. The procedure is done under general anaesthetic and takes about 45 minutes. So far there have been no complications and the results have been very favourable. If you live in the region and suffer from axillary Hyperhidrosis, it may well be worth you asking your GP to refer you to Mr Addison.

 

You may also be interested in LSA which is a new laser technique just introduced to this country by surgeon Mr Mark Whitely in Guildford. You may wish to see: www.armpit-sweating.co.uk. However, the cost is £3,500.00. You may also wish to see: http://lasersweatablation.blogspot.com Results have been very good to date.

 

 

Medications

 

 

B R Pharma who are the importers of Glycopyrromium Bromide (Robinul) tablets tell us that the importation of Robinul has been restricted, but they have Glycopyrrolate (the US name) tablets available and can supply to all pharmacists in the UK.

 

This drug is very useful for those who have generalized hyperhidrosis or for those where all other treatments have failed.

 

 0.05% Gylcopyrromium Bromide in a cetamacrogol cream – made up by pharmacy in a few areas in the country. Unlikely to get from GP, but dermatologist may help with this. A good cream for facial sweating.

 

 

 

 

 

Useful Products

 

We will try and keep you updated on useful products, but if anyone has any suggestions that they don’t see here, then please email: steve.tribe123@btinternet.com

 

I act as the groups ‘guinea pig’, and hope to bring you news of some new products very soon.

• Disposable underarm pads are helpful to protect clothes.  www.esteemclothingprotectors.co.uk
• Glycopyrronium bromide wipes – Secure Wipes (available only online) are good for the face and hands in difficult situations.  www.pharmacy.ca
• Dermasilk socks & clothing now available on prescription. www.dermasilk.co.uk
• Foot wipes & Spray. www.trycare.co.uk
• Prantal powder. www.expressgroup.co.nz
• Sports socks. www.p2d.co.uk
• Deo fresh bioactive insoles & vitality bioactive insoles. www.trycare.co.uk
• Sikoped insoles: www.feetlife.co.uk or www.canonbury.com

www.silversock.co.uk – good anti-odour, antimicrobial, antistatic & thermodynamic socks help with sweaty and smelly feet.

 

www.sweatshieldundershirt.com – NEW TSHIRT TO REDUCE SWEATING. CHINA BASED, BUT BRITISH GUY WHO SUFFERS FROM HYPERHIDROSIS. They ship anywhere in the world and free express global delivery is included in the price ($24.99 for single or $99.99 for 5 pack).- I am trying one of these out at the moment, and will update you how it goes! - Steve

Idrostar and Idrostar pro iontophoresis machines now have axillae pads for underarm sweating. Success rate is about 70% nationally using just tap water and more and more hospitals are offering this service in their dermatology departments. 

Forums

 

www.verysweatybetty.com

www.socialphobia.com/hyperhidrosis-forum

 

 

Useful Websites

www.sweatyhands.proboards79.com       (website especially for teens)

http://www.skincarecampaign.org

www.sweathelp.org – The international hyperhidrosis society

http://www.nhsdirect.nhs.uk/encyclopedia

http://www.bad.org.uk/public/leaflets

http://www.britishskinfoundation.org.uk/walk

www.iontophoresis.info

 

 

 

Hyperhidrosis in the spotlight

 

A new TV programme is due to be aired, produced by the production company responsible for ‘Embarassing Bodies’ & ‘How to look good naked’. This programme will be aired on BBC1, at 7pm and is to be called Diagnosis, it will feature sufferer/s who have yet to have a formal diagnosis. So get ready to tune in, press the red button, get interactive or whatever else you have to do to support this programme.

 

 

Anne – English lady who now lives in the US with her family has made a video on botox injections for Hyperhidrosis of the face and head. Although Botox is only registered in the UK for the axillae, there are one or two private dermatologists who do treat other areas under licence. See:  http://www.verysweatybetty.com/forum/viewtopic.php?f=14&t=926&sid=79aafbfc32b0c61750d6a4165d4af52e for Annes video

 

 

 

 

If we want to raise awareness, we all need to play our part. Julie has leaflets that can be placed in GP surgeries. So if you require these, please contact her.

 

Iontophoresis

 

********STOP PRESS******** The support group has been contacted to advise about the sale of a secondhand machine, proceeds of the sale going to the support group. Please contact us if you are interested.

 

 Iontophoresis uses a simple device to treat excessive sweating of the hands (palmar hyperhidrosis) and feet (plantar hyperhidrosis). It is particularly useful for people who’ve tried prescription strength antiperspirants but find that they need a stronger treatment. Used correctly and adjusted to individual situations, iontophoresis has proven to have a very high success rate (83% according to the American Academy of Dermatology) for people with sweaty palms and sweaty feet and about a 70% success rate for those using it to treat the axillae.

Iontophoresis uses water to conduct a mild electrical current through the skin’s surface. It’s not entirely understood how or why iontophoresis works, but it’s believed that the electric current and mineral particles in the water work together to microscopically thicken the outer layer of the skin, which blocks the flow of sweat to the skin’s surface. Once this sweat output is blocked or interrupted, sweat production on the palms and soles is, often suddenly and dramatically, "turned off".

How to Use Iontophoresis Effectively

During iontophoresis, patients sit with hands or feet, or both, immersed in shallow trays filled with water for a short period of time (20 minutes) while the device sends a mild electrical current through the water. The process repeated 6 times over a 7 week period. Once the desired dryness has been achieved, patients are switched to a maintenance schedule, ranging from once or twice a week to once every four weeks, depending on the individual. To maintain dryness, iontophoresis must be repeated as soon as sweating begins to return.

Sometimes, tap water in certain geographic locations may be too soft for iontophoresis to work. That is, it doesn’t contain many minerals or electrolytes (tiny particles that help the electric current travel through the water and into the skin). Adding about a teaspoon of baking soda to the trays of water may well help this.

If iontophoresis with plain tap water or tap water with baking soda doesn't produce the desired dryness, a prescription medicine called an anticholinergic may be added to the water. In the majority of cases this works.  

Women who are pregnant, people with pacemakers, or substantial metal implants (such as joint replacements), cardiac conditions, or epilepsy should not use iontophoresis. All jewelry should be removed before iontophoresis. If excessive dryness of the skin occurs, moisturizers are recommended. Skin abrasions, cuts, and hang nails should be covered with Vaseline or a similar barrier before iontophoresis to prevent skin irritation. If the skin along the "water line" becomes irritated due to iontophoresis, Vaseline should be applied to that area before each treatment. To relieve skin irritation that has already occurred, a simple 1% hydrocortisone cream is recommended. Patients are often concerned about getting an electric shock during iontophoresis but the current used is not strong enough to cause harm. It is normally described as a mild surge, rather than an electric shock and only happens if the hands or feet are taken out of the baths of water when the current is on. For this reason, it is recommended that hands & feet remain in the baths at all times when the current is running.

Most NHS hospitals in the UK provide an iontophoresis service and sufferers can buy their own machine for home us for just under £300. These are available from STD Pharmaceuticals. Website: www.iontophoresis.info or email for an information pack: enquiries@stdpharm.couk

 

 

So why has Megan joined us…….

 

HyperHidrosis Helping Hand!

 

 

 

Hi,

    Hyperhidrosis support group. I’m just going to tell you a bit about myself first. My name is Megan Churm and I’m thirteen years old. I live in Derbyshire. My everyday life includes going out with Steve Tribe’s son.

  Once me and Steve’s son [Dan] had been going out a while Steve told me that he was suffering from Hyperhidrosis. At the time I didn’t do anything about but this. After Steve told me I realised and I think he let me in to see that suffering from hh wasn’t easy and that it had a huge effect on his life, by not allowing him to live his everyday life as he wanted.

     Dan and me are still going out about a year on. And I’m now trying to help Steve through his low times best I can.

      A few months ago I also realised one of my friends in my class at high school had the symptoms of hh. After a lot of thought I decided to talk to her about this. She believed she had excessive sweating but she hadn’t been told anything about it and she was just hiding it away like lots of hh suffers do. So from me talking to her I got her using a body roller and she is still using this and it’s working great for her. I was so pleased I could help her.

       Through helping my friend I soon realised I wanted to help people with hh and after thinking for a short while, I knew I wanted to help teenagers with hh.

       I have have set up a text and call mobile number for teens. I am also in the making of a poster for teens which will be put up in my local doctors and my school. It would be great help if you could put some of these posters in your local area. I will happily email you the poster if you get in contact with either Steve or me if you are able to put it in your local area you can do this by contacting us on the Hyperhidrosis facebook page or email either of us.

        Steve and I are also looking at setting up a teen forum. We are hoping to include lots of information on this forum. Some of the information will include basic day to day stuff! I’m hoping to have a question and answer page on the forum with the most asked questions on there so people can quickly get the answer and I’ll try adding to it every couple of weeks if I find myself answering the same questions day in day out. . [If you are up for helping me with this though please email me.] There will be a chat page that any members can add to. 

      I’m also hoping to raise awareness in schools but this will take longer to sort. If you are up for helping me or have any ideas of what I could do then please email me about this.

         It would be great if you were willing to help me and if you have any ideas to put forward to me I would be happy to receive them. This would be a huge help to me!

        Thank you for listening to me go on and on. And if you know of anybody suffering then please be brave and let the have the number and let them know about everything out there for them and make sure they know there not suffering on there own as that is what I’m all about, raising awareness and looking after others.

    

Contact information for HyperHidrosis Helping Hand.

 

Help line number: 07967749737

My email: 96853@sstudents.belperschool.co.uk

 

 

 

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