Am placing my bet on facebook

I hope you've had a good start to 2012 ! As you may know Facebook recently passed the 750 million monthly users mark. I must confess that it gives me goose pumps to imagine what will happen when facebook passes the 1 billion users mark – I hope we’ll all be there to witness. In the meantime lets focus on the current situation. In hyperhidrosis terms, taking a conservative prevalence rate, of 1%-3%, it means 7.5 to 22.5 million facebook users struggle with hyperhidrosis. Again, using the current figures that 65% of sufferers have not sought for medical attention, would put the figure of facebook users who can benefit from treatment at 4.8 million minimum. Now, go to facebook and see the current groups and discussion on hyperhidrosis...its an absolute far cry! While I fully appreciate the true nature of the beast in that people don’t feel comfortable talking about it. The most successful hyperhidrosis patient groups on facebook have a few hundred users. What are my qualms with these figures? Well I feel it’s a lost opportunity and chance for the silent sufferer ! Its no secret that todays events are shaped by information. And the single most channel where that information is being shared is on facebook. Moreover, the beauty of facebook is that it is like God’s grace to mankind – it is free – no need for propagandas and campaigns ! To put it bluntly we are in the post “campaign” era. In the new era its simply one humble person sharing his story to another humble person, and letting the whole world eavesdrop. Just that, has proven to be more powerful than the a 1000 of tanks or billion-dollar value marketing campaigns. We have witnessed within the last 12 months how facebook has been harnessed to facilitate change, both social and political. It is in this context that am arguing that worst enemy of hyperhidrosis patients is not lack of campaigning, but silence. As I hinted in my last article, changing society’s views is not easy, to a large extent human beings are programmed to go with the current of social views and not against it. Now in the context of facebook, “social views” are now subject to one single medium of information – the discourse going on on facebook. One clear barometer of how society views any medical or clinical condition of is to the amount of research on that condition. For hyperhidrosis it’s absolutely a far cry. Yet we all forget that companies, universities, research institutes are comprised of human beings...who feed on the same diet of public information and discourse. What are the chances that these people all somehow wind up on facebook to link up with others? By making hyperhidrosis an embarrassing condition not to be discussed openly (this is not to minimise the experience of the individual patient) a sentence is being passed on how society ought to view the condition. Its exciting therefore to watch a real-life experiment, to see what the impact of the increasing hyperhidrosis discussions on facebook is going to have on clinical research as well as on activities of pharmaceutical companies for this condition ! Already the increasing importance of hyperhidrosis in Brazil for instance has already been noted ! In the mean time we all have work to do, LETS KEEP TALKING !

More questions than answers

The more I dig into hyperhidrosis the more questions I end up with than answers. 1. If treatments are available why are hyperhidrosis suffers denied access to them ? - If this is not the actual situation on the ground, why then do suffers feel this way ? - I have talked to alot of patients saying they cannot find something that works for them, is this only a small group of patients or is this the experience of all patients ? Meaning treatments work, but only for a limited time ? or that over time treatments are no longer as effective ? 2. For any manufacturer/pharma company to do R & D in any disease condition, profits are a major driver, not humanitarian desire to help, this is well understood, ...then how can we explain that hyperhidrosis is out of the radar when ca. 3% of the population can benefit from treatment, I suppose that prevalence rate is higher than for many conditions i can think of. 3. I can understand peoples reservations for not disclosing that they suffer from hyperhidrosis - perhaps it is too idealistic to expect sociatal view on excessive sweating to change - no matter how much information is put out there not alot of people want to talk about it...a critical mass has still not been attained with respect to information availability or number of people suffering...how can this be achieved ? in silence ? whats sad is alot of suffers i have talked to were for a long time under the impression that they are the only ones suffering from the condition...one can think of few skin conditions where suffers feel such loneliness... something has definately got to be done !

“Nothing but the truth”

Perhaps that’s stretching facts a little too far, to claim that anything is the absolute truth. Rather I ought to say my perception of the ‘doctor’s line’. Without needlessly bothering you with what you don’t want to hear, let me start off with a reality so many suffers share - a good number of hyperhidrosis suffers, or let me dare say, all hyperhidrosis suffers at least once in their life-time have gotten a bad vibe from a doctor regarding the condition. While this ‘line’ has been delivered with varying degrees of diplomacy, ranging from a polite ‘don’t worry about it, it will stop as you add more years’ to ‘if this is why you came here you are wasting my time’. Following the frustration that one immediately feels, one wonders why these doctors just CAN’T GET IT. How can one explain such insensitivity – or shall we say negligence – considering that patients are in actual fact clients – be served and not beneficiaries of charity. I hope by exploring the underlying factors behind this behaviour – hyperhidrosis patients may find their frustrations with doctors more bearable and perhaps even more might empower them to change this situation. The first and most obvious explanation is ignorance i.e. that lack of knowledge of the condition might cause them to not treat the patient satisfactorily. While there is a lot truth in this, but by intuition when doctors meet something they are ignorant about their curiosity must be raised causing them either to do more research about the issue or condition or to refer to more experienced colleagues. The second, underlying yet more intricate issue is misconception about hyperhidrosis – this in my view does explain a greater part of the attitudes and behaviour of doctors. Of course the major misconception is on the true impact on the life of the patient. Its imaginable that doctors thinking logically would not regard hyperhidrosis as having the same level of impact or even greater as a condition like psoriasis – and yet that’s exactly what research reports. Ironically even among doctors who have strong knowledge of hyperhidrosis, their perception of the impact of the various forms of hyperhidrosis i.e axillary, palmar-plantar, is often in contradiction to what patients experiencing these forms of hyperhidrosis have reported. Of course there are more issues to this problem, but let me stop there for now. So what is the way forward? Clearly it’s not enough to sing “Amazing Grace” to them; they have to be taught the lyrics as well, so that they can sing along. Raising awareness of the condition while being a very important goal, is not the end of the story, the ultimate is to enable doctors to see things from the perspective of the patient – this will be the day of liberation to the hyperhidrosis suffers.

Conversations with Hyperhidrosis Sufferers

The first phase of the study on hyperhidrosis outcomes has been completed, with lots of lessons learnt. We had a chance of holding two online focus groups and interviewing at least 25 suffers. This was supplemented by an online survey questionnaire. In the end we collected information from at least 70 English speaking patients. Additionally collected information from at least 30 German hyperhidrosis suffers, through a postal survey. I am very pleased to be sharing our experiences over the coming weeks. We hope that our lessons will be valuable not only to hyperhidrosis suffers but also to doctors and researchers alike. Here are the upcoming article titles: I. Even breathing makes me sweat. II. Two irreconcilable worlds: doctors vs. patients. III. Sweating in silence and fighting for recognition IV. “My deepest longings”. V. "How the system failed me"

Focus group discussions: details

The first session of the group discussions has been scheduled to run from 13th to 20th April, 2011.

All participants need to complete a consent form which has to be returned to Paul Kamudoni on the the following email: KamudoniP@cardiff.ac.uk.

The consent form is available on the following link:

https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0ByDyLaesBgd2NjRiY2MyZWMtZTA3Mi00YzNkLWIwZTQtN2M2NTg0YjM5NTg2&hl=en&authkey=CIPL0IQC

Group discussions on the impact of HH on QoL of 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 

Paul Kamudoni

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