[rosacea] Geoffrey Nase Help for Rosacea Sufferers
From: David Pascoe
Date: Tue Feb 23, 1999 6:05 pm
Subject: [rosacea] Help for Rosacea Sufferers
Hi All,
I have received the following email from Dr. Geoffrey Nase. As you will read
he is working toward publishing a book on beating rosacea. He is not on
rosacea-support directly but can see messages via the web.
He has offered if anyone is severely distraught and would like to contact
him, he will try to reply. If you post to the group with a subject "Help Dr.
Nase" he might see the request. If you don't want everyone to see your
request then I will forward emails to him for you. You will be able to read
below how busy he is.
As it will be 9-12 months before the book is published he has offered a web
forum or possibly a web site in the mean time. Don't expect anything to
happen soon, but be encouraged that someone out there is serious about
rosacea, serious enough to do some solid research and publish the results.
I have hugely thanked him for his email and told him that he will surely
sell a copy of the book to us all on the first day ! I have also offered our
collective help in anyway we can.
davidp.
For updated information about recent history see Dr. Geoffrey Nase.
--------
Subject: Help for Rosacea Sufferers
Hello David,
My name is Dr. Geoffrey Nase. I am a Ph.D. Microvascular Physiologist at
the Indiana University School of Medicine. My medical training is in Human
Physiology and Pathophysiology (study of the human body - how it works under
normal and diseased conditions) and my laboratory training is in medical
pharmacology (drug action and interactions within the human body). More
specifically, I am currently funded by the American Heart Association and
National Institutes of Health (NIH) to study microvascular dysfunction that
occurs in Diabetes and Hypertension.
Ironically, I too have rosacea. In fact, I have the most severe and
progressive form of rosacea - an unrelenting vascular rosacea with severe
inflammation, facial swelling, inflammatory papules and sebaceous gland
abnormality. I also have ocular rosacea.
My symptoms include:
1. Vascular Component of Rosacea:
· Intense blushing/flushing to heat, emotions and many food types - flush may
last for hours or days
· Telangectasia (severely damaged microvessels) of central face including
nose and cheeks
· Extremely sensitive skin - erythema (facial redness) induced by soaps,
moisturizers & sunscreens
· Facial Swelling - due to chronic bouts of facial inflammation and
dilation of facial microvessels
2. Acneform Component of Rosacea:
· Papules (red inflammatory bumps) predominantly around nose, cheeks & chin
· Small pustules associated with the hair follicles of nose, cheeks
and beard area
· Mild sebaceous gland hypertrophy (growth) of nose
3. Ocular Component of Rosacea:
· Chronic dry, gritty, irritated feeling to eye surface - includes foreign
body sensation
· Chronic watering of eyes induced by wind, sun, cold & during bouts of
facial flushing
· Rapid loss of eyelashes
· Morning 'sandman' - sebum buildup from overzealous meibomiam glands of
eyelid
· Prominent telangectasia of eyelid margins and whites of eyes - blood-shot
look
I have had rosacea for 9 years (since I was 21). It has progressively
gotten worse over this time - even though I have been on the standard medical
treatment regimen of oral antibiotics & topical antibiotic creams. For the
past 5 years I have dedicated my life to the annihilation of this disease
- almost every waking hour has been spent researching this disease for
effective treatments and potential cures.
Over the past 5 years I have personally:
1. Interviewed medical physicians in rosacea-related fields:
· 38 Dermatologists
· 10 Vascular Surgeons
· 7 Plastic Surgeons
· 4 Rheumatologists (Specialists in inflammatory diseases)
· 8 Endocrinologists
· 2 Immunologists (Specialists in human immune diseases)
· 10 Ophthalmologists
· 3 Allergy Specialists
· 3 Gastroenterologists (Specialists in stomach/intestine/bowel disorders)
· 6 Neurologists
· 2 psychologists
2. Interviewed Biomedical Research Scientists who have specialties in the
following areas:
· Skin inflammation (Immediate and Delayed Hypersensitivity Reactions)
· Vasculitis (Vessel Inflammation) and Vasculopathy (Impaired Vessel Growth
& Formation)
· Neurovascular Inflammation (nerve-mediated inflammation of vessels)
· Solar Dermal Damage (facial skin damage from sun's UV rays)
· Immunovascular Pathology (Immune system-mediated damage to blood vessels
and skin)
· Sebaceous Gland Hypertrophy and Hyperplasia (abnormal sebaceous gland
function & growth)
· Mast cell dysfunction - inflammatory cell type located around facial
blood vessels
· Disease states with abnormal facial angiogenesis (abnormal excessive growth
of new vessels)
3. Read almost every English-written medical article related to rosacea - I
have also read many of the European medical articles (English-translated)
related to rosacea
4. Interviewed Naturopaths, Homeopaths, Herbalists, Alternative Medicine
Practitioners and Medical Estheticians
5. Interviewed over 1,000 people with rosacea (all forms of rosacea with
symptoms ranging from mild to severe)
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Using a combination of Allopathic (modern) and Naturopathic Medicines, I
have successfully stopped the progression of my rosacea. Furthermore, I
have almost completely reversed the disease process - to such an extent that
I consider myself near-normal.
With the treatment regimen:
1. Vascular Component of Rosacea:
· I do not have any facial redness (no 'sunburned' look anymore) -
completely normal skin tone
· I do not have any telangectasia
· My skin sensitivity has improved by about 80% - still have problems with s
ome sunscreens
· I have had no bouts of swelling for over 1 year
· I still have a slight flush to heat - however, this has improved by about
60%
2. Acneform Component of Rosacea:
· I have not had a papule for about 9 months - when I do get one, it goes
away over night
· I have not had a small pustule for about 14 months
· My mild sebaceous gland hypertrophy of nose is cured
3. Ocular Component of Rosacea:
· My chronic dry, gritty, irritated feeling to eye surface -- has been
completely normalized
· Chronic watering of eye induced by wind, sun, cold - has been completely
normalized
· Rapid loss of eyelashes - has been completely normalized
· Morning 'sandman' - has been completely normalized
· Prominent telangectasia of eyelid margins and whites of eyes - has improved
by about 95%
Most days, nobody would ever suspect that I have (had) a severe form of
rosacea. In fact, they could get within an inch of my face and they would
still have no clue. I still have to keep up with the treatment regimen, but
each month the underlying disease state gets better and therefore I can add
back some of the things in life that used to be triggers for my rosacea
flares. Your group has found a great friend in Dr. Linda Sy and one of the
most important things that she stressed is absolutely true: "as you decrease
facial inflammation, vascular dilation and irritation, your skin function
and sensitivity normalizes" - as the normalization process progresses (less
facial inflammation and dilation of facial microvessels), this usually
allows the rosacea sufferer to apply cleansers, moisturizers and sunscreens
that in the past would have caused the viscous inflammatory cycle. The only
problem is that this normalization process is usually extremely slow (can
take months) with frustrating periods of 'ups and downs'.
Now, let me stress one point about treating rosacea. EVERYONE IS DIFFERENT.
EVERYONE IS UNIQUE. So a treatment regimen for one person may not help
another and in fact, might cause a different rosacea sufferer to get worse.
Rosacea is not a simple disease and to date it has perplexed most
physicians. There can be many forms of rosacea, many degrees of severity,
different underlying causes, as well as a variety of other skin disorders
that may also be expressed at the same time. For example:
1. One rosacea sufferer may have severe sun damage that has made his/her
facial blood vessels unable to handle any bouts of blushing or flushing.
2. Another rosacea sufferer may have no sun damage, but may have damaged
his/her facial blood vessels through constant emotional blushing.
3. A different rosacea sufferer may have an underlying autoimmune disease
that has damaged his/her facial vessels and surrounding skin.
4. A fourth rosacea sufferer may have an angiogenesis-related skin disorder
where new blood vessels continually grow in the face - therefore, anytime
he/she flushes, they have more blood flowing through the facial blood vessels.
5. A fifth rosacea sufferer may have been born with his/her facial vessels
too close to the skin surface (instead of small hair-pin loops at the skin
surface, he/she may have long torturous microvessels that run extremely
close to the epidermis).
6. A sixth rosacea sufferer may have chronically irritated his/her skin
with facial cleansers to such an extent that he/she has damaged the vessels
through chronic bouts of low-grade inflammation.
7. A seventh rosacea sufferer may have a disorder of the gastrointestinal
tract such that anytime he/she eats a specific food, potent dilators are
released into the blood stream -- resulting in extended bouts of flushing.
8. An eighth rosacea sufferer may have sebaceous gland abnormalities (with
no flushing) that have stimulated a chronic, localized inflammatory
reaction that causes damage to facial vessels.
9. A ninth rosacea sufferer may have no signs of rosacea throughout her
whole life and then during menopause may develop clinical rosacea due to
intense
bouts of flushing brought on by menopause-related hormonal alterations.
10. A tenth rosacea sufferer could have severe allergies that induce mild
daily bouts of flushing -- resulting in eventual damage to facial vessels.
11. An eleventh rosacea sufferer may develop rosacea after being treated
with topical hydrocortisone preparations (for other facial dermatoses like
seborrheic dermatitis or atopic dermatitis).
12. A twelfth rosacea sufferer may have been normal all of his/her life, but
may develop rosacea after one extremely stressful event.
13. A thirteenth rosacea sufferer may have developed a disease of the facial
mast cells (cells surrounding facial blood vessels that release potent
substances that can cause microvessels to dilate for prolonged periods)
- this alteration does not have to be related to systemic mastocytosis,
but in fact can be localized to just the facial skin.
14. A fourteenth rosacea sufferer may have a minor disorder of the nerves
that come in contact with the facial blood vessels - such that everytime
these
nerves are stimulated, they release abnormally high concentrations of
substances that cause facial blood vessels to dilate.
15. A fifteenth rosacea sufferer may have genetically weak facial blood
vessels that rupture and leak in response to any minor increase in facial
blood flow.
I could go on and on..
Although rosacea is very complex, and everyone must be treated as an
individual, there are great starting points for all rosacea sufferers to
take. Furthermore, with some time, every rosacea sufferer can break the
viscous inflammatory cycle - eventually becoming near-normal. However, in
order for you to do this, you must understand the physiology and
pathophysiology behind this disease - to the extent that each of you can
understand what form and what severity of the disease you have so that you
can directly treat the disease process (instead of taking blind stabs at the
disease). Unfortunately, most physicians do not know enough about the
disease process (they haven't spent every waking minute researching this
disease like I have - nor have they had to live with this disease every day
like I have). Those physicians who are on the cutting edge of rosacea do
not usually have the time to sit down to evaluate the entire underlying
process in each individual patient - this is not the physician's fault, it
is primarily the fault of the ever changing health care system and health
insurance agencies. Believe me, most physicians want to help and would love
to cure the average rosacea sufferer, but the truth is that this is one of
the most complex disease processes that dermatologists ever encounter.
This is where I come in. David, I can truly help most of these rosacea
sufferers. I can help them learn about their individual form of rosacea
- I can translate all the medical knowledge for them. I can break down the
latest medical theories and treatment strategies in such a way that the
average rosacea sufferer can understand the major medical findings and more
importantly, understand how to apply it to his or her individual treatment
strategy. The average rosacea sufferer can do quite a bit of the leg work
for the physician by bringing in medical/scientific information that I supply
so that the physician can be more focused and be more informed on the
cutting-edge of rosacea treatment. There is no magical potion nor is there
an instant cure for rosacea, however, I do have a firm grasp on all facets
of rosacea. There are many things that have lead to my current understanding
of the rosacea disease process:
1. My extensive training in the medical/scientific field - especially
pertaining to microvascular abnormalities.
2. The fact that I have rosacea - ironically, a disease that I have been
perfectly trained to study.
3. My in-depth interviews with physicians from all medical fields related
to rosacea - enables me to see the big picture and the entire disease process.
4. My in-depth interviews with over 1,000 rosacea patients - stressing the
complexity and different forms of the disease.
5. My thorough knowledge of all of the medical/scientific knowledge that is
out there pertaining to rosacea.
6. In addition to the above mentioned, the secret to my depth of knowledge
has been in studying diseases and drugs that are not related to rosacea, but
that in fact, might be extremely beneficial to many rosacea sufferers. To
date there have been very few double-blind placebo controlled clinical
studies on rosacea. Furthermore, there are only a few topical and systemic
medications
that are indicated solely for the treatment of rosacea. Thus, physicians
are extremely limited in their approach to the treatment of this disease.
However, one can learn a lot from other diseases or drugs that have been
thoroughly studied (even if they are used to treat different diseases and
are not specifically indicated for the treatment of rosacea). For example:
· One can extrapolate a great deal of information from in-depth studies on
various topical and systemic antiinflammatories based on their use in
diseases such as Lupus and various inflammatory or immunocompromised diseases.
· One can extrapolate a great deal of information through studying diseases
of weakened blood vessels such as occur in certain forms of Diabetes.
· One can extrapolate a great deal of information through the study of
diseases
of abnormal vessel growth - abnormal levels of angiogenesis (such as is
seen in psoriasis).
· One can extrapolate a great deal of information about the nerves
innervating facial blood vessels by studying diseases mediated by severe
emotional
blushing.
· One can extrapolate a great deal of information by studying free radicals
and their role in inflammation and microvascular damage.
· One can learn a great deal about the formulation of very potent topical
medicines (cremes and gels) by learning from top notch compounding pharmacies.
· One can learn about future potential treatments and cures by talking with
pharmaceutical companies about their Phase 1 and Phase 2 clinical drug
studies. This information is usually not known to the general public or
physicians for an additional 3 to 5 years.
· One can extrapolate a great deal of information by studying diseases of
facial blood vessels such as is found in congenital port wine stains.
· Lastly, one can extrapolate a great deal of information by studying
diseases that are related to thermoregulatory dysfunction.
David, I would like to help as many people with rosacea as I can. The
problem is that right now I do not have the time to talk (or e-mail) each
individual about his or her rosacea. I really would love to do this, but
right now I work about 14-16 hours a day - I am in the process of renewing
my research grants, writing medical journal articles, writing book chapters,
teaching medical classes, finishing committee work and doing biomedical
research in my laboratory. In addition, I have several national and
international Vascular Biology Meetings coming up in the spring.
Furthermore, I am getting ready to move and am helping my fiance get ready
for our wedding (although I now realize that I have absolutely no say in
this wedding process). Lastly, I am also researching a special surgery that
may result in my complete normalization.
I am in the process of publishing a book that should be of great benefit to
all rosacea sufferers, as well as physicians who treat rosacea. The book
title is:
"Beating Rosacea: Vascular, Ocular and Acne Forms"
Treatment through Allopathic & Naturopathic Medicines
However, this book won't be published for another 9-12 months (publishing
is a long process). In the mean time, I hate to see anybody suffer for
another year. So, I want to help as soon as I can free up a little time. I
was thinking that maybe in the beginning of June we could set up a couple of
live chat sessions (for the rosacea Web group). This way I can answer many
of the frustrating questions that rosacea sufferers have. In addition, I
would love to set up a WEB site (by July or August) called "Beating
Rosacea". Once again the problem is finding some free time.
What do you think about the live chat session in June?
Please Post this message to your board.
For updated information about recent history see Dr. Geoffrey Nase.