Future treatments

[blong]

I thought it would be a good idea to start a topic on any potential, and new treatments that we might of heard of. Hope is a powerful emotion! I cant understand why more research is being done with this debilitation disease!

I know Pinker wrote earlier about botox via iontophoresis which sounds promising. I wish it was a practiced treatment, I have not heard at all about anyone using it besides a clinical trial.

At Virginia Tech recently (I am a Chemical Engineering student there) went to a lecture done by a faculty member describing his research. He is doing research into chemicals (I wish I would of written down the family name of these!) which cause feelings of temperature at the neurons and nerve sites. One common one would be the chemical in chili peppers which makes you feel hot and makes you sweat. But there are also ones that make you feel cold. The professor was currently doing research on how to produce these and their effect. He did not mention HH at all in the presentation because that was a side topic for his research. I went down afterwards to talk to him about whether or not he has ever heard of HH (he hadn’t) and how developed the research in it is (not very). But it does sound promising once it is further developed! Imagine topically putting these chemicals into (via iontophoresis) which will make you feel in your hands and feet (etc..) like it is cool. Maybe that would stop the sweating!

Again it is good to have hope, because as (unfortunately) this disease grows there will be more research into how to treat it. Please post with other information you may have come across!

-Ben

 

[Jezza]

I think it's a very good idea, in fact I think I started the same topic in the past, but I didn't get too many responses then, so let's try again...

I looked into the botox delivery through ionto research as well but I don't think it's making any progress, after that clinical trial I've heard nothing about it since and someone apparently sent an email to the ones who did this trial and they send back that they lacked funding and support to pursue it further. I did notice however that one of the doctors (Kavanagh) that did this study also published some other studies on HH (for instance with glycopyrronium bromide cream). I'm not entirely positive that it is the same person though.

What I would like to point out is (but perhaps you already know this) that the ionto method used in the research is quite different to what we are used to (with the trays etc). They treat every little area (as I remember correctly about .64 cm^2) seperately.

It's a shame because I think it could be more effective than the relatively crude method of injecting botox.

One other method I read about is the botox delivery with local anaesthesia first using a MEDJET or DERMOJET injector...still, I don't think it really adds something to the conventional method of botox injections apart from maybe less pain.

What I have thought of myself as a possible future treatment is some biomods (no, seriously) affecting the nervous system. Maybe if the medical community can find a way to implement some kind of simple device that tricks the body into thinking it is cold (maybe with some kind of turn off switch in the whrist area 8) ), we won't sweat anymore.

Otherwise, I would say (designer) medication that is intended in the first place to attack the sweating instead of medication that reduce sweating as a side effect to numerous other bad things, this in order to minimize the negative side effects that people encounter now when taking anticholinergics etc.

OR (and this is still my big, if possibly naive, hope), they finally find out what is causing HH, find out it's not just a genetical issue, but is caused by an underlying cause that can be treated (nobody in my family has HH except me, so if they say it's an autosomal dominant gene, than I would be very unlucky).
Some say they would have found the cause already if it would be there, but I think investigations into HH have only been conducted since internet (via fora like this) established that there are many people who have the same disorder, which forces the medical community to take it more seriously and less able to dismiss every single case as an unfortunate incident.
For instance, 5 years ago I went to my GP, who told me there was nothing I could do. 2 years after that I went again, and he asked me if I wanted to get botox injections (not that that turned out to be so easy, but still).

 

[blong]

Great ideas, I too have thought about something implemented at the wrist that would either chemically or electrically (nerves send impulses electrically) trick the nerves into thinking it is cool.

I completely agree about there is a mystery behind HH. No one else in my family either has it, I am the only one. I heard somewhere that if you are Japanese you are more likely to get HH. Both my grandparents served in the navy off of Japan in WW2. Is there something to that??? My grandfather had skin cancer. I was electrocuted as a little kid. Who knows if one of these things could of given it to me.

I did not know about the different type of iontophoresis they used, interesting.

If there was a University Med. school (UVA is known for dermatology) that would really research into possible treatments I can almost feel like it is right around the corner! I think this is as bad as any other skin disease if not the worst one. (or neurological disease... take your pick)


My mom's side of the family is 100% dutch as well Jezza, but I doubt that has anything to do with anything...

 

[Jezza]

Yeah, I know about the Japanese and Asians having more HH too, but I think it's a little strange.
You could say it supports the theory of a genetical cause but then why is it also found in other human races that have no asian ancestors...Unless HH is a disorder that goes back to even before there were more human races or the same gene (genome?) developed in all human species seperately.

I don't really think there is a connection...

Although I have to admit, my grandfather WAS born in Indonesia, his parents were captured by the Japanese at one point during WW2, his father (my great-grandfather) was in the Dutch army over there...

Still, all my ancestors (well, at least for some generations) are of Dutch descent so there's no asian genes that might be causing it in my case, so I don't know about that one...

I have thought sometimes about things from the past causing it, especially spinal cord or head injury. For instance I was in a car crash when I was a small child and some other minor accidents, but in that case there would be millions and millions of people that have more or less the same symptoms and I doubt they'd all have these kind of injuries...Now an endocrine disorder, that's another story...

 

[tbanner523]

How about using a "Superabsorber"....there has to be something on these in the material sciences. Of course, they would all probably be toxic to the skin....but maybe?

http://www.youtube.com/watch?v=bWaivm9XpNg

I am going to patent its use....

 

[blong]

thats so funny you mentioned that because I was also thinking along those same lines. If not for absorbing the sweat but for attacking the sweat glands. We must think alike because I was thinking just the other day about patenting a compound like that for use in HH. Great minds must think alike...

The problem comes because these compounds are so hydrophilic that it is virtually impossible to dissolve them into a solution; meaning that you could not just apply it like you would 20% aluminum chloride. You could, I guess, have these compounds absorb the aluminum chloride and then place the solid onto your skin, then when you start to sweat there would (theoretically) be a two way attraction between the coumpound and the sweat and small amounts of the compound (with the Alum. chlor.) would be absorbed into the sweat gland.

I HAVE NO FORMAL EDUCATION IN MEDICINE- aka i could be completely wrong.

That particular hydrophilic compound is not toxic, I played around with it a lot in chemistry this year.

 

[tbanner523]

I have zero medical background as well! I was just reading national geographic magazine, and there were articles on the material sciences (see the Lotus Effect, awesome stuff!), and it just made me wishful, that someone could think of a crossover for medical uses. Alas....