Name: Jay Singh
Note: This post is intended to share my strong viewpoint on hyperhidrosis and the progress being made in terms of viable/effective treatment options. In no way is it intended to target, hurt or critique the decisions/actions various hyperhidrosis members (including the members on this page) take in order to comfort themselves/release their inner frustration. The viewpoint/message is not to be taken personally, and rather is intended to open up a new school of thought. In no way am I an accredited professional, and hence while I have done plenty of research and have acquired knowledge about the subject, some information/thoughts may be incorrect or subject to misinterpretation/personal thought. The post is a lengthy one, however, I personally believe it holds a very strong idea/message, helping us all take little steps to live a happier and more promising future.
Hi everyone, I am new to this group. My name is Jay Singh, and I am currently situated in North India. I am 20 years old and have lived abroad for around 16 years of my life. I would just like to start off by giving a little background on when I discovered I had hyperhidrosis and what treatments I had tried. I had developed hyperhidrosis around the age of 5-6, having it primarily in the focal areas. At the time the issue was very minor and affected me to a very small extent (due to a very low rate of perspiration). However, once I entered my teens (13-14), that's when I felt the condition really taking a toll on me and becoming an issue. I had initially tried numerous options (iontophoresis, botox, sweat block, drysol, driclor, and antihydral), some worked well, while others didn’t. While a few of the options worked, I never felt that complete satisfaction/relieve from my sweating. Either it would come down to the issue of the treatment no longer working as effectively as it initially had (possibly not working at all) or the fact that I had to apply these certain solutions/perform these treatments on a frequent basis- making it not only inconvenient, but meaning I had to go through more pain (due to some of treatments not working as effectively anymore). Soon after I decided to take an anticholinergic called “glycopyrrolate”. While it provided immense comfort/relieve in the initial few months, it seemed to stop working as effectively and I had to start taking larger doses in order to maintain a state of “0 sweating”. Not to mention, new studies/research have associated the intake of anticholinergics with a higher risk of dementia. Therefore having to increase my dosage, meant taking a decision of whether I was willing to accept the risks associated. Hence, due to dissatisfaction, I decided to take some time to identify why us Hyperhidrosis members receiving the newer more effective treatments as rapidly as we desire and came to a conclusion that a large chunk of this problem is associated with us.
Over the years I have done research online regarding the subject of hyperhidrosis, looking at different forums/websites and trying to keep up to date with any new research and effective treatment options. A common trend I have noticed over the years is that there has been plenty of sharing of HH stories, the difficulties it causes, how its so miserable and how we should just support each other & help each other through it. And less of using the negative energy we possess and turning it into something constructive/positive (i.e taking action). Not only is this seen amongst our hyperhidrosis community, but many large corporate’s websites/organizations follow the same. For instance, the IHHS has focused some of its on what hyperhidrosis is, the ways in which it affects our lives (which is not of much help as it only reinforces how terrible the condition is + much of this information we already know as we are experts) and how its ranked/associated to be more socially devastating than eczema. Some websites even provide us with information in their intros, consisting of: How it destroys self esteem and causes social and job related issues. Don't get me wrong,the IHHS is doing an incredible job and is providing much of the support/spreading awareness that is needed. There is plenty of information/current day treatment related articles available and tips/tricks that are provided on their website. There is even a database helping find doctors who are specialists in the field, near you. One of the greatest steps the IHHS has done is taking is that they have called in large corporates such as Allergan, FDA members, many research teams & individuals, aswell hyperhidrosis “experts” (those who have hyperhidrosis firsthand)- enabling patient focused drug development to take place. However, I personally feel that the number of effective treatments, let alone treatments that are coming out are not being optimized due to a larger problem- us.
There are an estimated 365 million individuals worldwide struggling with the condition…. Just take a second to imagine going to the USA and every single individual you see/know/are near has hyperhidrosis…. That's how large the figures stand. Sure… the numbers may be exaggerated and may fail to take into account strictly those who sweat excessively in normal temperatures/conditions. However, even if you take the former figures from the past, an estimated 1% of the population has been said to be suffering from the condition… an equivalent of 75.3 million sufferers!! (7.53 billion* 0.01)! These figures are significantly high and hence while there may be a disparity in results, the numbers are significant (even exceeding the population of certain countries) enough to make a large difference- quick enough with much more ease. The main issue is that there is a lack of unity and collaboration amongst us hyperhidrosis members. The numbers are astounding, however, we are not using them to our advantage.
I am sure that more than 80% of people on this group are currently unhappy with the treatments that are out there and find that either they are not reliable/effective in the long term or they are too expensive to maintain and keep up with. The issue is that the treatments being developed today are attacking the side effects or a very minor part of the condition, instead of directly targeting the cause. It is extremely sad to hear that we don't even know what's the root cause hyperhidrosis!! And hence the first step to finding a solution, is attacking/identifying the cause. While its great that there is spreading of awareness relating to the condition, this is not being optimized as we are leaving the work/responsibility in the hands of NGOs or various organizations/groups to do this for us and there are only so many & so much these entities can do. The main issue that stands is that there is lack of identification. Research and dermatology based teams/academies/companies will only invest in a certain field, if they feel there is a large scope for return. The issue is that hyperhidrosis is not being identified as one of these markets and is not being put into this field of vision. The Hyperhidrosis treatment market is one that has an extremely large potential and can thrive. Research teams & large corporates will only invest in R&D if they are to receive an interest on their investment made (if it's gonna get them their share of returns (profits). Yes, we live in a capitalistic world sadly… 📷:(.
With a vast number of sufferers (75.5-365 million individuals), this is a large potential market for these teams/investors.
I would like for y’all to take a moment to think about this question… How many of you would go in and pay a larger sum, if you know that treatment you are to receive is going to continue to be effective in both the short & long term, is one which is reliable (not like anticholinergics/iontophoresis/topical creams which may stop working suddenly) and is one that won’t have you sweating excessively for another day in your life..? I am convinced the vast majority would say “I would” considering how large of an impact this condition has on our lives. In our everyday lives, us hyperhidrosies have to constantly make choices/plan for our futures- Whether it's opting for a specific career choice due to our sweating, whether it's deciding to attend a social event or whether it's even the way in which we plan our day (transport, residency location, the foods we are going to eat (for some), or when we have to take our medication and whether the benefits outweigh the risks associated. This becomes all too heavy on our minds and we change the scenario by taking action & changing the way we use social media.
The issue arises due to the misuse of groups on social media, such as on: Facebook. While it helps us stay informed with what treatments worked for some, what treatments didn’t work for others, and provides a sense of belonging. This will only be of benefit in the short term… I have seen far too many posts and stories (HH videos) shared, talking about how hyperhidrosis is a horrendous condition, how it makes me depressed and how it makes my life almost impossible to deal with. From personal experience, I just feel worse about myself after watching these videos and I question why I had to be chosen to suffer this condition… It simply enforces & embeds the idea further into my head, that my life is tough and that I have a condition which makes each and every day harder to live happily & comfortably. While: introducing your life, sharing your story and speaking about how hyperhidrosis has affected you & how you have ran into so many terrible/embarrassing/awkward situations; may bring you a sense of relief & may provide a sense of belonging to others. Eventually, it brings no positive energy/good & doesn’t help contribute towards the long term issue/goal of a newer- life long lasting- effective treatment.
Looking at it from a rational and outer perspective: What's the point of these pitty parties and complaining about how miserable hyperhidrosis has made our lives? What's the point of feeling stuck with the way you feel and complaining about it (when many of us are leaving the job in the hands of a just a few organizations)? What's the point of conveying our sympathy and saying “it’ll be ok, we’ll get through it,” when many themselves feel helpless or may not feel that way (optimistic)? What's the point of any of it…? It certainly isn’t going to happen magically…. and leaving the responsibility in the hands of a few firms is not the appropriate choice of action either. I am not here to say everyone is not taking action but I know the vast majority (>85%) are not, including me who hasn’t until the last few months. I know for many the reason is because they don’t know how to help (I speak about a few ideas on how to, later in this message) or are scared to throw themselves in. But For all you know, due to the hesitation to take action, you might have to end up waiting an extra 10 years for an effective treatment, simply because most research teams/companies didn’t even know/acknowledge that hyperhidrosis existed or didn’t believe many individuals suffered from it (due to a lack of spreading awareness- effectively/optimally) (hence to them- not a market they want to invest in.) This leads to an extra 10 years of unwanted and avoidable suffrage. So sympathizing for one another; may bring out a sense of relief in the short-term for many, but will only leave us stranded & having made no progress in the long term. So, why not use this negative energy and turn it into something positive?
I can confidently say that more than 70-80% of the members on the group can agree that they made/will make their career choice based on this condition (Hyperhidrosis). I have even read a handful of mothers posting, writing: “I feel so sorry/terrible that I passed on this condition to my 3 year old son/baby.” It’s so sad that many of us have the worry and the decision to make whether we should have a child or not as we do not want them to go through what we did. But now, there's no turning back. So why don’t we secure a better life for our young ones. Why don’t we start making ourselves heard and take a hold the situation ourselves. Whether its fighting for a solution for yourself or fighting for a solution for your young one, its imperative that we reach our final/end goal: Finding an effective, life long lasting treatment. We must make ourselves heard. Just imagine the feeling of finding an effective, life-long lasting treatment 3 years down the line instead of 13 (-10 years less). After it all: “ I made a sacrifice by putting myself in a slightly uncomfortable position & by taking a hold of the situation myself, but WOW was the sacrifice worth it & liberating. I am no longer sweaty, I feel free, I feel comfortable in my own body and I can do whatever I want with confidence” Its important to not have to worry about whether you will ever find someone who will love you to the fullest. Or whether your child will be able to go to school without having to live with the fears of anxiety, depression, low self esteem and/or a lack of friends. I strongly believe: It isn’t necessary to continue suffering and accepting a condition for what it is, just because you were born with it. Each and everything has a solution. Sometimes it just requires a combination of the right input with the help of technology, to form one. Some may even decide that they are happy with who they are and want to embrace the condition they have. That's great and is a personal choice that one has to make. But I know there are plenty who would argue otherwise and Hence here are a few starters or a few steps we can take (please don’t refrain from providing your own thoughts/ideas/perspectives)(These are just a few starters)
Solutions:
Create a common Facebook page, merging all the members who are apart of a hyperhidrosis related group and have them join 1 single one. Doing this would create a base/platform for having our voices heard by higher authorities or by the academies of dermatology. However, it is important that we have a base of around 50,000-100,000 who join the group. The more, the merrier. This would act as a forum and allow for us to come up/discuss solutions regarding the steps that should be taken to allow for newer more effective treatments to come out faster (i.e how we will spread awareness).
A common event: This one would require some saving up and sacrificing finance spent on leisure/entertainment, but could go a long way in a very short time period. However, a use of charitable organization and/or Rotary (I have already discussed this with a Rotary club head) could be used to fund a part of the project. The idea would be to have as many HH members fly in from all nations across the world and organize a large event where we make our voices heard and spread awareness. This may be hosting some positive events that bring media attention to hyperhidrosis. It could also just be visiting these organizations/places and providing our story and informing them of what we are looking for in terms of an effective treatment. I.e to health organizations, the american academy of dermatology, research centers such as John Hopkins. It could be taking to the streets and holding banners where we gain media attention (heard that it can be successful) and there is awareness created about the condition. This may seem intimidating at first and you may question why would I possibly make myself known as that person with “hyperhidrosis” for those who didn't know previously. But it's important to remember this small sacrifice you’re making could lead to a much happier future 3 years down the line instead of 13. Inner peace is the biggest step to being happy in everything you do and everywhere you go. However, this may require some extra savings during the financial year (for those who stay/live abroad from the planned country). The USA, UK, Germany or China would be preferable locations they have some of the leading & largest research institutes (including university research teams). This may be a very smart investment to capitalize on for the future. If this does not appear to as a viable option. Then:
Social media: it may even be making our voices heard through social media or doing small things on the internet to make hyperhidrosis a more well known problem. It could be allocating groups of people to contact research institutes in mass numbers; informing them about the condition, trying to inquire if any research is being done, conveying our strong need for more effective, reliable, and long lasting solutions and lastly letting them know of the figures we’re talking about (75.5 – 365 million).
Events in Home country (local): This may be holding small events in each of our home countries. Hyperhidrosis members are spread out all across the world, and Local Events would allow for taking care any financial related issues (if a member really is unable to attain the funds needed to travel abroad), this may be a better option. Similar steps as mentioned in the “comment events- international” category could be taken, however, now amongst local research institutes etc and spreading awareness (banners etc) locally. This would need to be done by us on a common day for higher rates of success. This would help portray how widespread the problem is and it may help bring out better success in terms of awareness. However, the only downside to this would be that the figures would be substantially lower and hence research institutes/organizations may fail to see how large the figures are. This may even lead to less unity and hence less media attention that could have been brought to the topic.
These are just some of the ideas I came up with. It would be of great benefit if you provide your ideas & input as well.The important thing is that we take action now and immediately. For you teens out there, this could mean having to make a choice: whether you take up your dream job or take up a job based on this condition. For some this may mean getting into a relationship/marriage with someone you love and who cares about you or marrying someone who may not be fully supportive of who you are or who you may simply feel uncomfortable doing certain things around. For some this could mean your child fulfilling his educational opportunities and being able to thrive at what he/she is good at. For some this could mean discovering the new you, the one without refrains and restraints. And last but not least, for some this could mean finally getting the chance to try a new activity/thing that was long desired but not done due to their sweating condition, before they pass away… So please, please , please, I ask of you… please help me & help us to take hold of the situation and not to leave the responsibility in the hands of others. There is only so much these organizations can do and beyond that point it's up to us to make a difference. Remember… making a small sacrifice in unity today, will lead to a happier & better tomorrow. So please please please, let's not wait and hope for the solution to be brought to us… let's make it happen!! Please feel free to share your own ideas, thoughts and opinions as this would be highly beneficial! Lots of love and respect for you all! Let's make a change, starting today! Thank you!