> With the risk of sounding extremely selfish i cannot help but
think
> that the more common this condition becomes the more likely a
> positive breakthrough will be made in treating it sucessfully.
> Especially if there's money to be made!
Good point Sally. That is exactly what should happen. But, it does
not seem to be happening for two fold reasons:
1. Galderma is flooding the marked and medical journals with
publications stating that their products will cause remission of
rosacea. This is a major setback.
2. Pharmaceutical companies think that there is no more money to be
made in this arena because we have metrogel and finacea. The last
two weeks I have spoken to MD physicians who head up five separate
pharmaceutical companies that specialize in treating inflammatory
skin disorders. These were team leader MD's in charge of research
and development. All five stated that there were no studies being
performed on rosacea treatment or any in the future because it could
be held in remission with the current treatments. That is
scary!!!! After lengthy discussion, two physicians finally realized
that avoiding triggers was actually not considered a treatment.
They did not know about flushing, swelling, burning, skin
hypersensitivity, etc.
Rosacea was considered a disorder that gave a person that cute rosy
glow. Yep. While that was mostly bad news, I perked the ears of
two R&D leaders on topical anti-flush products and anti-burning
products. The mention of a future non-profit research foundation to
help fund grants bumped up the excitement considerably. People and
pharmaceutical companies will write us off if we dont take a pro-
active informative stance. Yes, approach them from a monetary
aspect, approach them with the unique idea that they can actually
treat the underlying cause, but...... approach them. Two R&D
physicians are now going to sit down with their board this month and
discuss topical nitric oxide inhibitors, sensory nociceptor
blockers, VEGF downregulators, co-treatment with lasers plus novel
topicals, real time in vivo microscopy of the facial blood vessels
during laser treatment to make sure they photocoagulate and dont
just constrict and hide from site.
No single disorder that I know of is so misunderstood and
misinformed. Psoriasis, Atopic dermatitis, Eczema, etc. have their
own non profit organizations that have funded hundreds of thousands
of dollars of research. Most of them are at the genetic level of
research where the cures lie. What do we have. We have the
National Rosacea Society which is a pharmaceutical company
(Galderma) which has chosen the top five board members to fund
studies. These board members are paid by Galderma, have published
many articles on rosacea for galderma and the metroproducts, and
MOST important, fund each other's grants.....which are related to
reinforcing why metronidazole is so great. There are 6 huge
problems in that sentence. Any one of those infratctions would get
you kicked off a nonprofit organization. Period. Dr. Dahl, one of
the top dogs just published an article that changed what
dermatolgists thought about rosacea. He wrote an article
titled, "Metronidazole Remains Remission in Rosacea". Do you know
how many times that is quoted to me when I go looking for physicians
willing to do research in a dead area??? Its not a conspiracy.
Its just plain bad science and medicine. The money we donate to
NRS, goes to three of the presidents and VPs of Galderma -- they
take around $900,000 off the top each year for "consulting
purposes". This is public knowledge. It is also Disgusting.
I am writing a four page paragraph "Letter to the Editor" that has
already been accepted into Clinical Therapeutics. It is
titled, "Rosacea and Neuropathic Burning: The Fifth Rosacea
Subtype". When this small little publication comes out, do you know
the possible changes that may take place -- it could help change
rosacea from a cosmetic dsorder to more than that,and to re-open the
doors that have been shut. Physicians need articles to use as
references.
Please dont take a "sit and wait stance". This has been going on
for 12 years. No one ever deliberately says that they dont want to
make a difference --- it usually just happens quietly --- waiting
patiently for the other person to ignite the spark. There has been
no spark in 12 years (just derivations of what we already have
available). A year goes by quickly. The other person always reads
the posts and stays up on the medical literature. But, they are
still waiting for someone to start the ball rolling. The other
person will always do it. UNACCEPTABLE. David Pascoe started this
group over 6 years ago. We have 4,500 active members and three
times that many reading posts. I just hope that when we announce
that a new Rosacea Research Foundation has been established, 7 board
members of impeccable quality leading the way, 5 physicians on the
Medical Advisory Committee and several other committee heads, that
everyone takes an active role in making it the leading non-profit
professional Foundation for funding better treatments and an
outright cure. Please dont let the other person do it .......
because that other person is you.
Geoffrey -- waiting for the other person to make the first move
>
> --- In
rosacea-support@yahoogroups.com, "Dr. Geoffrey Nase, PhD"
> <drnase1000@h...> wrote:
> >
> >
> > This is so very important for all rosacea sufferers to
understand –
> > do not fight through irritation!!! Most derms will tell you to
> > fight through the irritation because the skin will adapt. This
> just
> > is not the case with our epidermis, our sensitized sensory pain
> > fibers and highly vascularized dermis. Read the last sentence
of
> > the abstract below -- "Subclinical skin damage can make the
skin
> > vulnerable to further irritation and delay recovery of chronic
> > irritant dermatitis". Subclinical means that there are no
obvious
> > signs. Maybe just a transient burning, feeling of warmth or
> itching
> > sensation.
> >
> > Many people ask me why it seems that rosacea is more prevalent
> > today. It is my opinion that it is single handedly due to the
> > cumulative insults that we administer ourselves everyday.
Washing
> > twice a day with a harsh detergent soap, moisturizing with an
> > irritating product, putting on anti-papule medications like
> finacea,
> > and least but not last the absolute frenzy craze to erase
wrinkles
> > and smooth pores. Danger Will Robinson!
> >
> > Geoffrey
> > ______________________________
> >
> > Dr. Geoffrey Nase
> > Advocate for Saving Face
> > ______________________________
> >
> >
> >
> > Contact Dermatitis. 2003 Aug;49(2):91-6. Related Articles,
> > Links
> >
> >
> > The irritation potential and reservoir effect of mild soaps.
> >
> > Loden M, Buraczewska I, Edlund F.
> >
> > Identification and reduction of external noxious factors is one
key
> > point in the strategy for the treatment and reduction of contact
> > dermatitis. A wide variety of soaps on the market are claimed to
be
> > suitable for the use on sensitive skin due to their mildness.
The
> > aim of the present study was to illustrate possible differences
in
> > the irritation potential of 8 products and to investigate
whether
> > surfactant residues may form an irritant reservoir on the skin.
The
> > study was double-blind, randomized using healthy human
volunteers.
> > The inherent capacity of the products to induce irritation was
> > determined using conventional patch test technique, whereas
> > detection of potential surfactant residues on the skin was done
> > using a methodology developed in the 1960s for detection of the
> > corticosteroid reservoir in the stratum corneum. The method
> > comprised the release of active substance from the stratum
corneum
> > reservoir by occlusion of the skin with an aluminium chamber,
> > followed by evaluation of the biological response. In the
present
> > study, the soap-treated area was rinsed with water and then
> > occluded. Instrumental measurements of the transepidermal water
> loss
> > and superficial skin blood flow served as indicators of the
> > injurious effects of the products. The results showed large
> > differences in irritation potential between the products, and
some
> > of them demonstrated considerable damaging effect. Moreover, the
> > study proved the presence of barrier-impairing residues on the
skin
> > after rinsing with water. Subclinical skin damage can make the
skin
> > vulnerable to further irritation and delay recovery of chronic
> > irritant dermatitis.