VerySweatyBetty.com

By our very own Denise, Following her, Help Wanted….
For the Record,

If any of you have read my last post, and thought I might be implying that Hyperhidrosis does not compare to scleroderma and we have no right to complain, that was not what I was trying to say, not at all.

My point is that Michele Mayer was a highly educated woman, her husband is in fact a physician, Moreover Michele was highly respected in the medical community, could speak the lingo, knew what she had and it still took 6 years to get a proper diagnosis. In that 6 years she was aware of what medications, procedures and protocols were available to treat the early stages of her disease.

Yet, because of her inability to get a proper diagnosis, all of these avenues were closed to her. We will never know if she could still be alive today, had she been diagnosed in a timely matter. Moreover, Michele had done her research and frequently went head to head with the doctors, who repeatedly tried to prescribe outdated medications, that had been shown to be wholly ineffective, while fighting her requests for another. Albeit, the truth is there is very little to help people suffering with Scleroderma. As her skin turned into a shell like structure, her vital and unseen organs were doing the same. This disease is a killer, very little is known how to treat it, and it is a death sentence. It may be 3 years it may be 5 years, but with the passing of each year, reduced mobility is a given as ones internal organs turn to stone.

Yet, Michele worked on her own memorial, did what she could with her children, and wrote about her life, her doctors, her friends, family, as the disease slowly turned every breath into a struggle. She had to fight the medical community every step of the way, as the disease continued to turn her internal organs into stone.

How do we proceed?   Does any of us hold a Doctorate in Public Health? How do we proceed to get the attention of the medical community? How do we proceed? I continue to write letters, and be ignored.   I sent a letter to a doctor here in town, he is mentioned in one of Suzanne Somers books as a surgeon who turned away from surgeries for excessive sweating to a more natural remedy. NOTHING, no response.

What should we do to be heard?

Help us fight to be heard, fight with us to be treated for our medical disease/disorder.  We deserve this.  Write you story on living with Hyperhidrosis, we are still in the, Dark Ages and will continue to be if we don’t stand our ground and help raise awareness.  You can send your story to Anne, Beverly, Denise, kimberly in our friendly forum, we can keep it all confidential but our little voices, can make one BIG ONE.  So please help.

Denise

If you have problems with groin sweating, please visit Denise’s website www.coolwrapps.com

Forum link

Meeting someone new is always a big thing, no matter who you are. Sometimes, even meeting people you already know can be nothing short of a nightmare, especially if you suffer with Hyperhidrosis. In fact, when you have an embarrassing illness, the stress involved in meeting anyone new for the first time can be enough to put you right off. I don’t have to point out that meeting a new potential partner is one of the biggest things you’ll ever do, this could be the person you spend the rest of your life with.

This subject has come up a few times lately. It seems love is quite possibly in the air! Some of our members have recently mentioned a potential new romance on the horizon. I think it’s probably got something to do with the cooler weather, it seems to go a long way to make us feel better about ourselves. Summer is incredibly stressful and we pretty much live to get through it as intact as we possibly can. It’s always a huge relief when September arrives, we know there’s around six months before we start hotting up again.

With all that pressure on you, one of the first things that will go through your mind (especially in the warmer weather) is your Hyperhidrosis. Will you sweat when you’re on a date? When should you tell the other person? What would you tell the other person? How will they deal with it?

Well, I can’t really answer the final question because the truth is, it’s not for everyone. The chances are that you probably have an 90/10 chance they will be fine with it. Most people won’t have a problem with it. Before my HH kicked in really badly, it used to come and go. When it went, I’d not give it a second thought. During one of the ‘dry’ times, for a few weeks/months I had a boyfriend who suffered with it. We’d hold hands, I’d wipe mine down my jeans when we stopped holding hands. It didn’t occur to me to mind. I vaguely remember ‘the conversation’ we had about it, I’m sure it went something like “why are you hands always wet?”. Him: shrugged “I dunno”. Me: “oh”. And that was that. There are some who can’t deal with it, but that’s life, it’s nobody’s fault. We need to see it for what it is, honesty. It’s one of those ‘take it on the chin’ things. Chances are, with those odds, you may not even have to deal with a moment like that. Even if you do, you’re not alone. But, when do you mention it, and how?

Timewise, there are two ways of doing this. You can either be up front and lay your cards on the table. The advantages are that if the person does have a problem with it, you can walk away from the person without having spent the time fretting about how they’d take it – and maybe even getting to like them. The only real disadvantage is that at this point in your relationship, they don’t know you. This would immediately put you at a disadvantage and maybe even give the sweating a chance to dictate the outcome rather than you being in control. The person might get the impression that it’s a big thing in your life – and if they think you see it as a problem, then you’re taking the chance that they will, too.

The other option is to take it as it comes. I call this the ‘mermaid/merman’ technique. You can call it what you like, but if someone asks you why you have wet hair or wet hands, it helps me to give it a ‘nice’ name. Just the word ‘Hyperhidrosis’ sounds depressing to me. Replying with “Oh, that! I’m a mermaid!” sounds more confident and less like I have a problem – and doesn’t bring the mood down. There’s only so much you need to tell anyone and it’s just another ice-breaker. Only say what you’re comfortable with.

I’ve tried both ways and I’m more comfortable with the this technique. The advantages are – you’ve come to like each other and they might see past the sweating side of things a little easier because they have had a bit of time to get to know you. You’re also not imparting that it’s a disproportionate issue for you. Even if it feels it sometimes is, things do change. There are new products coming on the market on an almost weekly basis. Scientists are currently looking into isolating the faulty gene that causes this – once they’ve done that, chances are it’s a matter of time before they can work out an effective treatment or maybe even a cure. You can’t rely on a cure though, you still need to be realistic. It would be an amazing bonus if it happens.

As for when the time is right, well, that’s completely down to you. You’ll have got to know the person a bit better by this time, even if it is only three or four dates in, you’ll know you like each other by now, so it’s just a case of picking your moment. Waiting for the topic to come up naturally can often be the best way. It will tell them that you have the confidence to deal with it and you don’t let it dictate to you. Obviously as time goes on, they’ll get to know how it really is for you. Whatever you do, do it with confidence. You know what they (I always wonder who ‘they’ are) the more confident you pretend to be, the more confident you’ll feel. That is one of the biggest attractions we could offer a potential new partner. You are you, your HH is just ‘something that happens’ to you that you have little control over. Don’t let it sabotage the good stuff.

I’m going to give it a go. I’ve been meaning to do it for some time (my doctor thinks I may have Coeliac/Celiac’s disease) but I’ve had so much on that I’ve not had the time to research going gluten free, nor have I had the energy to do anything about making anything more than toast or cereal, thanks to the Fibromyalgia/Polymyalgia/Adenomyosis. Hopefully now it’s starting to cool down a bit I will have a little more impetus.

Forum link

Today I found a blog, I wasn’t doing anything but doing something I’ve not had time to do for ages – having half an hour’s pure unadulterated surfing, carefree and following interesting looking links! I came across something that has summed up a huge part of the internet over the last five years. I call it the dark-side of the net – it’s people who have such sad little lives that they feel they have the God-given right to issue death threats, speak abusively about the subject’s life, appearance and even their children. Sick individuals who, for some reason, feel so consumed by their hatred that there’s nothing they wouldn’t say. I almost wept when I read one such comment – “I hope a paedophile gets your child”. I know, it’s unbelievable and unforgivable. All that on one woman’s blog and recipe site about being gluten free.

I’m really glad I found the blog, I’m now going to take my doctors orders and see if I can’t help my hyperhidrosis – and my general health – by going gluten free. There’s a lot of evidence to suggest that rethinking your diet will help your sweating, you only have to google “hyperhidrosis gluten” to find link after link after link.

Many thanks to Shauna James Ahern for many things – her outlook on life, her dedication to her gluten-free way of life, her blog and recipes – and most of all, to her unhinged ‘haters’ whom without, I would never have found this lovely lady or the momentum to sort out my diet.

Now, who’s up for going gluten free? See if we can’t kick Hyperhidrosis’ butt together?

Gluten free girl’s website

Forum link

As you know, school is back in swing for many children, with some just finishing their Summer break shortly. Many of our younger members are in a silent panic over this and how their HH will continue to control them during school hours. As a parent of 3 (one step daughter) 2 of my children both have HH. I am lucky that I am educated in this field and can show them how to cope and disguise their HH.

We often oversee how they are coping emotionally and physically. This is so important to address with your teen, child and young adult. They may seem OK on the outside but I know from experience and life suffering as a teen in the 80′s when HH was unheard of, it is hard to handle and with all that goes on in our daily life’s they are probably suffering in silence. Children and teens can be so cruel. I faced this a lot and was called Sweaty Betty.

If your child, teen, young adult has been diagnosed with HH or is showing signs of excessive sweating I encourage you to talk about this often and get in touch with their inner beings, how they feel, if they show signs of depression. We all suffer from this from time to time with living with HH, it emotionally drains us and the physical side of it also.

Your child, teen or young adult may feel different or even a freak! I know I did and know many others who feel the same way. Make sure they are not hiding away in their room dwelling on this…We have the tools and great people who can help you and your child.

We know which products work, can help with clothing and have many Hyperhidrosis product manufacturing companies (all of whom all suffer personally) who can give them advice on using their products effectively and many forum members who can help with hints and tricks on living with HH.

We encourage everyone to they find a good Dermatologist that knows about HH and can help them with treatment. If you are not able to do this, there are some fantastic products on the market now that really work and treat HH. We also have discount rates on some products, thanks to some very kind product manufacturers and companies.

Here at VSB we offer a safe place and friendly forum for your child, teen or young adult to get together and chat among themselves with great monitors who are teen sufferers themselves, (AmyLouise, Hannah, Milly), The adult administration are Beverly, Sally, Lisa, Kimberley and myself. We monitor who joins and what is posted. We also have a counselor, hyperhidrosis nurse, dermatologist who specialises in hyperhidrosis all on hand to help answer your questions.

We pride ourselves on this free facility and have reached our dreams as the world’s largest online (and probably offline!) privately owned Hyperhidrosis Support website. We are – and always will be – unpaid volunteers. Some things are far more important than money. Raising awareness while helping people come to terms with – and take control of their sweating – is exactly what we are all about. Thankfully, we have some fabulous sponsors who enable us to keep this website up and running and funding all sorts of projects to bring awareness of this miserable disease.

I went though many years of not being understood and hiding away under layers of clothing and battling this alone, I feel into depression and sunk inside. Please don’t let this happen to your child, we are just a click away, our Facebook page, either search for /betty.sweaty or click HERE) is active daily. We encourage parents to talk to each other for mutual support and discuss how your child is coping. We are also on Twitter @verysweatybetty and YouTube (/verysweatybetty) where we have our two tv documentaries (one in the UK for Channel 4, the other in the US for TLC channel) and even a couple of videos from one of our lovely members (Alan) who uses iontophoresis to successfully treat his hands. Alan is a multi-talented street magician and uses his hands all the time.

You have all the tools you need right here at VSB, WE are here for advice, support and most importantly friendship with others who all suffer from Hyperhidrosis.

Hugs,

Anne x

Excessive sweating – Hyperhidrosis

Excessive sweating is a skin disease called Hyperhidrosis.  One of the most common mistakes a non-sweater makes is to pigeon-hole the sweater as dirty, smelly, unhygienic, lazy, hilarious, and thinks sweating can be miraculously cured by having a shower and applying antiperspirants.

What causes the sweating?

Excess sweating is just one symptom of Hyperhidrosis.  Everybody has an internal thermometer.  Our bodies function at a set temperature.  When our temperature rises just 4 degrees C, our body panics and becomes confused. If our temperature rises by only 7 degrees C, we die.  If you have Hyperhidrosis, your core temperature can’t be controlled in the normal way, your internal thermometer is broken. You become hotter and hotter until your body starts to panic which causes you to sweat profusely to cool down again.  Once your temperature has risen, it takes such a long time to subside that you can be soaked through from head to foot within minutes and there’s nothing you can do about it except hope that nobody notices. Not easy when you’re at the shops, work or school – or anywhere out of the safe confines of your own four walls. This causes many sufferers to become virtual hermits, especially in the hotter weather.

This is why we created our website. We have both suffered for many years from this disease and realised that there are millions of people worldwide who don’t know it’s a disease, they think it’s ‘just them’.  3% of the population suffer, although this figure could be higher as not everyone has access to, or consults, a doctor. Unfortunately, many doctors are unaware this condition has a name, let alone is a disease. We want to help people like us who have been through the personal hell that makes you wonder why you bother, and realise that there are things (not cures, unfortunately) you can do to help minimise the effects of sweating – hopefully meaning nobody else will notice.

We share everything on VSB, tips, new medical trials, procedures, stories etc, and we are lucky enough to personally trial a lot of products from many different trustworthy companies. If a product doesn’t work then we say so. Very useful when you’re wading through the rather overwhelming array of different products and their promises.

Although we have sponsors, we don’t personally make any money from our website – we give our time and expertise for free. What money we do make goes back into projects such as raising awareness of Hyperhidrosis, we are passionate about this.

Our site is guaranteed virus free – every link is to a tried-and-tested company with products that work for people like us.

Hello all,

We have had a member ask a very important question:  Why do you not support people that have had success with their ETS, and help to spread the word?
If you have had a successful ETS and have very few side effects, we would love to hear from you.  Helping others decide on if this is an option for them?  We tend to be on both sides of the fence about this surgery.

I am sorry if we seem to be totally against ETS, were not.   This operation is the last resort for sufferers and over the years has come under the hammer and some very distressing life changing side effects, that have made the sufferer worse than before.   Even speculation where some ETS surgeons were not always telling the whole truth on how this surgery is preformed and the possible side effects.

With all this thrown at you and then my last surgeon I’d seen saying,  “you don’t want this surgery”, prob would not work for your facial, cranial and you could end up with Horners, Raynards and severe CS.  I sweat bad all over already so choose not to travel down this path.   Then researching about this and the horror stories.  Not sure on the stats on how many are successful or went terribly wrong?

It brings up a good point, with all the negativity, there are some happy endings and successful surgeries.  I know several members who have minimum Compensatory Sweating, and are happy with not having sweaty hands and feet.  Then I know many who this has changed their lives for the worst.

Let us share your story.

Session Two is in full swing, sign up to take part in this HH discussion.  This could be so important to how the Medical world sees how HH effects us on a daily basics.

Hello all,

There is currently a discussion going on about how Hyperhidrosis affects our everyday lives.  WE are shouting out for participants to help take part in this.  The more they are aware of how it affects us the better in the long term treatment will be and Doctors understanding about this awful affliction and skin disease.

Everything is confidential, all is text typed, you will take part with others who suffer from HH.  All the data is saved and used this will help us get one step closer to having awareness and people understanding how it is to live with this.

PLEASE HELP TOWARDS ANOTHER GOOD CAUSE.  REMEMBER OUR LITTLE VOICES CAN MAKE ONE BIG ONE!

A Novel Measure of Quality of Life in Hyperhidrosis Patients

Intro

The Welsh School of Pharmacy is developing a new patient centred instrument (measure/index) for evaluating the quality of life of HH patients.
Our goal is to create a user friendly measure that could act as a two way communication tool useful to HH patients as well physicians, enhancing the physician-patient communication in HH. On one hand the tool will allow patients to understand their condition better. On the other hand, the new measure will enable physicians to more accurately understand how their HH patients really feel and how their condition is affecting their lives.
In order to develop a tool of the highest usefulness, HH patients will be involved throughout the development process of the new measure.
As a first step in the process, a group discussion on “how HH affects the everyday life (everyday activities) and the quality of life (i.e. social life, emotional life, satisfaction) of HH patients” has been planned. We are interested in learning how the various dimensions of the participants’ lives are affected by HH.
The discussions will be convened online (text based), via a secure platform. We intend to run three sessions, each taking a period of 7 to 10 days, with different participants. Each participant will take part in one session.

Your role as a participant

Once you confirm to be a participant you will receive a link, a username and a password to ensure your secure access to the platform. Only the moderator will know your real name, to ensure anonymity in the discussions.
Your role, as a participant, will be to take time everyday, during a session, to read the posts made by the moderator (Paul Kamudoni) and the responses of other participants and to give your responses.
Everyone with HH is invited to participate! Drop me an email on KamudoniP@cardiff.ac.uk.

URL: http://everydaysweating.blogspot.com/2011/04/patient-group-discussion-on-daily-life.html

Paul Kamudoni
(Lead – Hyperhidrosis Quality of Life Research Team, CSER Welsh School of Pharmacy)

We have been talking about this a lot in our forum and Facebook page and telling people the importance in coming out of the closet about your HH.  Most people will have sympathy for you and will understand and maybe even accommodate for our excessive sweating.

My good friend Kimberley brought up a good one in the forum and wanted to focus on this and encourage you to tell all about your HH and go on to educating them about this disease we have no control over.

Kimberly:

So, I don’t use the word “hate” very often but I HATE when I go to someones house and the make you take your shoes off!!!!

I went to a friends parents house the other day and they made me take of my shoes!!  Just thinking of that upset me and my feet immediately started sweating because I was anxious   Needless to say I excused myself quickly and left.

I mean, I can’t sweat all over their floor and I didn’t know the well enough to ask for socks!!!  Ahhhhhhhhh I wanted to scream.

I usually always wear socks or at least bring some with me if I know I’ll be taking my shoes off but it was a spare of the moment stop.

Maybe I should have put this in the Ranting Section LOL   

My response to Kimberly:

Awe Kimberly,

Gosh how we are faced with obstacles daily living with this. I too had to go to friends house for a coffee morning about 2 weeks ago. She asked everyone if they wanted a coffee all said yes and then I perked up and said, “Can I have mine iced please?” She said sure, why? I then went onto telling the whole new English group about my disease, Hyperhidrosis!

I was sweating just talking about it as I was also anxious on what they were thinking. One of the other ladies handed me a napkin to wipe the back of my neck and dab my face as they could oblivious see the sweating beads appear!

Then after dabbing myself and explaining it’s all over my body and I can’t control it, Laura came up to me and said we love you and hugged me and said, it’s only sweat love, who cares?

She then ran upstairs and brought me a fan down and placed it right in front of me and made me a huge iced coffee.

Two of my new friends are nurses and had heard of it but never seen it and they were intrigued and wanted to know more.   So I told them how it hinders my life daily.   Told them that I wont be having my Botox again as my insurance wont recognize it They told me to keep appealing and make sure that it is put down as a necessity for my health.  (Which will be a whole other story soon)

Went on to tell them that they prob wont see me much in the blistering heat of summer and they said, they will and will accommodate for me and my sweating …But how we are cornered and don’t know what to do!  I know they will help me but I will still hide away if there is no pool or AC.  I avoid BBQ’s and other outside activities.  Being wet on my whole body is no fun and no one can see this or understands.

I feel your pain babe…How many times have we been in this awkward situation! We all have and there is nothing we can do. I can imagine how you felt..You would have been skidding all over the floor I just sit there and pour from my hair line and hope to God no one notices, or go to the bathroom often and dab myself down. Once I did this and had tissue stuck to my forehead and face How embarrassing is that!

So the moral of my story is while were panicking inside..you and your bare feet, the solution is always carry a pair of socks with you …run like hell if you don’t know them that well and they will prob never invite you again …or think screw it and be honest and tell them that we cant help the way we sweat and proceed to educate them on it

I still cringe explaining it as they all glare and stare making one sweat a little bit more, but now they no it may be easier for me in the future?

Loves ya Kimber, always carry socks, fan, paper towel regardless where we go and avoid plastic seating

www.verysweatybetty.com