Darier's Disease
Bonnie Whyte
has a terrific case all over his back, shoulders and
onto chest. It definately is worse in the summer heat & humidity. We
haven't found anything to help and dermo dx don't seem to have great
ideas either. Differin didn't do anything; cortisone seems to make it
worse. Only thing that worked: massive oral steroids (when it was a
complete disaster), but you can't do that too often. Another time he
massively scraped his back and it tore off the skin and it is "free" of
the dots. This is tough on a teen -- any ideas? Skin is super
sensitive.
Teresa Stevens
I can remember. Seems to get worse with age (just turned 30). Sometimes
tea tree soaps and lotions can help (check @ The Body Shop). I found out
the hard way about the steroids---went in for TMJ surgery, where they gave
me massive steroid doses so I wouldn't turn into a human balloon. Voila!
No more Darier's on my face. (Did I mention I really *hate* steroids?) My
derm had me on topical triam for a while, but it is also a steroid, and if
your son's skin is already sensitive, this stuff will make it thinner and
worse. Sometimes in the summer the only thing that will keep this under
control is antibiotics, and that only has a limited effect. My father used
to have my mother rub his back with Vaseline intensive care lotion, but,
again, this only provides limited relief. At this point, there are several
theories about what causes Darier's, but all remedies are only "band-aids",
so to speak. My brother had some success with a completely vegetarian
diet, but, again, only for a limited time. Darier's is part of something
called the Koebner family of skin diseases (why, I don't know) and is also
considered to be an autoimmune disease. Basically, the body finds
something in itself that it doesn't like, and forces it out through the
manifestation of skin disease. (Does that make some sense?)
I remember being very self-conscious as a teenager, and the Darier's made
me more self-conscious than I would have been otherwise. I don't recommend
the steroid treatments, and all the medications currently available work by
completely drying out your system, destroying it, so that the body doesn't
have enough energy to make the stupid little bumps. (As if the burning,
itching, and bright red skin during flare-ups weren't enough!!!!) Make
sure you take every opportunity to let your son know that this disease
doesn't define him, that he is wonderful and special and no skin disease
can ever change that. Try any good moisturizers you can find, and perhaps
a gentle chemical exfoliant (without alcohol). Keeping the skin clean is
very important, especially during the hot summer months----excess sweat is
the kiss of death for Darier's!!
Healing thoughts to you and your family,
Teresa
p.s. You didn't mention---Is this hereditary in your family? Most times,
Darier's is.
Starrb6181
>I can remember.
teresa, can you give us a link that explains in medical detail what is known
about Darrier's disease? I have heard of it before, and know it is rare and an
"orphan disease" so most treatments revolve around treatments for similar
exfoliative dermatoses. Maybe Dr. Joe would give us a brief on Darriers too.
since psoriasis comes in so many forms and varieties I don't see why you can't
use this newsgroup too and get some useful info. (and alot of crap, alot of
which I am guilty of generating on occasion ... )
Teresa Stevens
Nope, sorry! I wish I could, really I do, but the problem is that the
dermatologists really don't agree. When using any search engine, input "Darier's
Disease"---the search will bring back mostly images that are, ummmm, not pretty, to
say the least. The stuff I mentioned about the Koebner family is something I
learned just last year, in archives for this ng, from someone known only as "Paul
S.", from Australia, I believe. Other things I know from personal experience, and
that of my family. The main "drug of choice" at this point is Accutane, which is
nasty, nasty stuff. Took my brother a good year to rehydrate his system after he
went off it, and he was only on it six months (if that long). The other info I've
gotten off the web and from docs is not all the same as what I have personally
experienced, so I can't say that I agree with it all. For those of you who would
prefer a direct link, try these:
*Very* Clinical:
http://www.ama-assn.org/sci-pubs/journals/archive/derm/vol_134/no_5/letter_4.htm
And here's a more general one, but still plenty technical:
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?124200
Thanks for making me look---I had lost all my old bookmarks. Hope this helps! The
second one has links to general info, features of the disease, chromosome mapping
(Chromosome 12, locus q [I think]), etc. etc. But, like I said, all the features
they list don't apply to me, so the main thing to remember is that Darier's, like
everything else, tends to differ with the individual.
I would welcome any input Dr. Joe would like to mention---it's hard to find
anything definitive on Darier's (it took me the last hour to find those links), so
I'm always happy for any new info or points of view, especially as pertains to
treatment. This stuff itches like h*ll!!!!!!!!!!!
Teresa
Teresa Stevens
familiar. The pix are linked to individual files w/ details about each
pic, but the files are kinda long. Also check the sites in my reply to
Starr. And the best thing for your son to learn is to keep notes (even if
in his head) of questions to ask the dermatologist, any problems he may be
having, etc. Seems that Darier's has been this big mystery disease up
until recently, and the FDA isn't quick to approve any funding for research
or meds (other than the very dangerous ones that exist now). There are
research studies going on (I know of a couple in the Chicago area), so
there is hope!!!!
You didn't mention your son's name; I hope he feels better soon. Yeah,
winter!!
Teresa
http://www.medlib.med.utah.edu/kw/derm/pap/09sy.htm
Bonnie Whyte
are always more, but rarely with anything terribly practical. We'll try
the tealeaves/body shop idea -- do you think the tannin in tea is the
effective agent? After all, it works on leather... Also, I'm serious
about your brother trying veggie diet and the concept that the
autoimmune system is trying to reject something. I have had eczema in
various forms my whole life -- as a child many food allergies, now
mostly cat & tree-related and I can cope. My mom equally has lousy
skin, but no where to the degree of my son, Kyle.
Fortunately, we live in Wash DC area (where its hot and sticky) and
pediatric dermo, Dr. Silverman at Georgetown U is intrigued. Went in
yesterday and he is tracking down new drug that we'll try on a patch and
see if it does anything. We had a discussion about new vs. mature skin
-- when Kyle ran into a door and scraped his back, no bumps for a very
long time! Have you tried the exfoliating stuff or chemical peel idea?
I hesitate due to the sensitive skin and potential for further
eruptions.
Thanks again.
Teresa Stevens
You're very welcome! Practical? On *Darier's*? <Big fit of laughter>. I have
yet to figure out *why*, rather than doctors would rather not tell us there is no
cure, but there really is a big smoke screen on free patient info on Darier's.
NORD, NIH, and the CDC (and those are only three of the many sites I found last
night) are more than happy to give information---for a price. I'm sure I'm not
the only one that hasn't the patience to wait for stuff to come in the mail;
sometimes it is only enough to get the info you desperately need at the *exact*
moment you're looking for it!!!!
<getting off my soap box>
Now, you had other questions.
1. It's tea TREE,***not*** tea leaves. Has nothing to do with tannin.
Completely different plant, from Australia. Generally used for lots of different
skin probs, mostly for dandruff and dry skin. Use for Darier's is something I
came across strictly by accident, but it works (or at least it did for me, and
other people who used to come to this ng, but have since gone to the Darier
Colligian site, which I can't find to save my life!)
2. Darier's and autoimmunity----To give you perspective, let me mention that my
brother is a licensed nutritionist/medical missionary, thru the Seventh Day
Adventists. (Not a member of SDA myself, but they do have very sound teachings
as far as diet.) I'm basing the autoimmunity concept on other things I've seen
my body manifest, and other things I've read. Besides the Darier's, I also have
Rheumatoid Arthritis, and other autoimmune things, like lately my hair is running
away swiftly (good thing I've got a lot of it). The basic definition of
autoimmune is the body attacking a substance within it which would normally be
okay, excepy that in autoimmune the body feels a threat, and will do all manner
of things to get rid of that threat----pain, hair loss, *skin disease*, to only
name three. And the diet he was on was truly strict-----he had people cooking
for him constantly, and his diet, even now, is very far from mainstream. When I
say vegetarian, in his case, it means NO meat products whatsoever, inc. all
meat-based cooking oils, NO dairy, No lots of things. I wouldn't wish this diet
on any self-respecting teenager. The reason this type of diet is advocated, and
works for some, is that there seems to be a problem with Darier's patients (and
those w/ other skin diseases, for that matter) and protein assimilation. Seems
we can't process it. Don't know about you, but I just gotta have a cheeseburger
every once in a short while! (In other words, going off meat for a couple of
weeks didn't help at all for me, but I probably didn't try long enough,
soooo....)
3. Georgetown U?! Cool!!! Great reputation there.
4. Did I recommend the chemical exfoliant from Body Shop to you? It's kind of a
daily chemical peel, on a small scale, but it keeps things under control. I
normally use it only on my face and chest area, even though I have trouble on the
the rest of my body as well. I forget what the Body Shop stuff is called, but
it's a dark red-brownish liquid, and it's alcohol free. Lately I use the face &
body scrub from Freeman's----it's a grain based product, but really not as good
as the chemical exfoliant. (Need to go get more of that stuff.....)
5. Things NOT to use: Aapri, or other seed-based exfoliators. Only aggravate
the condition, instead of helping it.
6. Since the chemical exfoliant is alcohol-free, it shouldn't iritate Kyle's
skin as badly as other products. It's worth a try, but I can understand why
you'd be hesitant. Also, you might want to moisturize with plain, 100% pure
petroleum jelly (Yes, I said Vaseline!). Every other product out there has
potential irritants. (Potential irritants tend to do nasty things like make you
feel as if your skin is on fire. *Ouch*)
Hope that answers everything. Feel freee to post any other questions you have to
the group, or you can e-mail me if you want. (Generally, if it's on the ng, I
answer on the ng and also send an e-mail copy. If only e-mail, I don't post
reply to the ng.)
Hang in there; we're gonna beat this yet!
Teresa
Bengal49
Bonnie,
My sister has had eczema for 30 yrs, and recently found a product that cleared
it up in less than a week. In the information that came with it, it says that
it works on many different skin viruses and fungus. If you would like to look
into this product for your son, I would be happy to email the 800 number that
is on the bottle to you.
Lu... (Beng...@aol.com
Starrb6181
>I would welcome any input Dr. Joe would like to mention---it's hard to find
>anything definitive on Darier's (it took me the last hour to find those
>links), so
>I'm always happy for any new info or points of view, especially as pertains
>to
>treatment. This stuff itches like h*ll!!!!!!!!!!!
thanks for the info, I didn't mean for you to spend so much time looking it up
! I am sure if you email Dr. Joe he may be able to give you some more info on
Darrier's.
Take care,
Doug
lisanorth
antibacterial (maybe anti other microbes as well) action...not the best one for a
moisturizer....I have from time to time put a bit of it in the potion I mix for
myself to use after bathing (high quality oil, plus aloe vera gel, plus vitamin E
oil, plus some sort of scented soothing oil such as lavender).
I find that a low protein diet helps me a great deal! When I was crippled with PA
and covered with P, I went on a VERY low protein diet for a while....no animal foods
what so ever....and cleared my PA right up, and my skin cleared up beautifully as
well. I don't eat that strictly anymore, but if I do eat a hunk of dead animal, I
take digestive enzymes which helps considerably.
Lisanorth
Paul & Martie
says...
>
> If you would like to look into this product for your son, I would be
> happy to email the 800 number that is on the bottle to you.
> Lu... (Beng...@aol.com
>
Paul M. Richards
Bonnie Whyte
" The name of the product is Virualcide, the company is Visions Marketing
Group and the number is 800-864-2803 I hope that it works as well for you.
Best Wishes"
Lady Andy2
Just a quick comment... when trying any new thing on sensitive skin (what skin
ISN'T sensitive around here?), try a SMALL amount somewhere first. Some things
that help one person will irritate another, and you don't want to be slathering
on huge amounts without knowing your reaction to the stuff first. (example: I
tried tea tree shampoo... did NOT help, but irritated more, glad I only bought
one small, expensive bottle)
When all else fails, Eucerin is usually pretty benign and can help if used
frequently after bathing.
Best regards,
LadyAndy2
MarkWest61
>lisa...@hotmail.com>
> I don't eat that strictly anymore, but if I do eat a hunk of dead animal, I
>take digestive enzymes which helps considerably.
Hi Lisa
Wow! A hunk of dead animal? How appetizing. Do you skin it and cook it first
or do you just gnaw on it raw like a pack of wild hyena <g>
Seriously now, please tell me about the digestive enzymes. Is this for PA?
This Laughing Hyena needs to know, Mark
lisanorth
here in the far north does ya know!! The digestive enzymes just help to
break down food..which might help from a lot of different perspectives.
One of the theories about P and PA is that the intestines allow
particles that are too large to pass through into the body (leaky gut
theory)...so from this perspective, digestive enzymes might assist the
body to brake stuff down into smaller particles in the
first place. From another perspective, the intestinal flora varies from
individual to individual and with the same individual according to what
you eat. The make- up of the flora of a vegetarian is different than
that of a heavy meat eater for example. So a person who doesn't
regularly eat meat, doesn't quite have the digestive capacity for it as
a meat eater does. Taking digestive enzymes in that case when meat is
eaten would aid in its digestion. Some people have fewer
digestive enzymes than others, we tend to loose HCL in our stomachs as
we age for example. So digestive enzymes may aid those individuals.
Improvement in the digestive process is helpful in healing P and PA in
my opinion.....The skin is also an organ of elimination of sorts....so
when the other organs of elimination are working at their best, it takes
pressure off the skin in my opinion.
For what it's worth!
Lisanorth
Starrb6181
>ome people have fewer
>digestive enzymes than others, we tend to loose HCL in our stomachs as
>we age for example. So digestive enzymes may aid those individuals.
>Improvement in the digestive process is helpful in healing P and PA in
>my opinion.....The skin is also an organ of elimination of sorts....so
>when the other organs of elimination are working at their best, it takes
>pressure off the skin in my opinion.
>
>For what it's worth!
>Lisanorth
>
>
but at least HCL isnt an enzyme right? (mineral acid, last I heard)
lisanorth
enzyme....most of them are comosed of a protein along with an essential
mineral and possibly a vitamin....zinc is necessarey for the enzyme that
activates Vitamin A for example...most enzymes require additional support in
order to perform their functions in the form of a coenzyme (composed of
vitamins and minerals)...Vitamin C functions as a coenzyme to the enzyme
proline hydroxylase which is involved in collagen synthesis for example.
Enzymes and coenzymes work to either join molecules together or split them
apart by making or breaking the chemical bonds that join molecules
together. HCL does have a function like that, so is it an enzyme? Dogs have
about 20 times the HCL in their stomachs than humans do, helps for digestion
of all the meat that they eat and all the less than sanitary stuff they eat.
I learned a trick from a Naturpath years ago to take HCL with meals when
traveling in the third world....traveled all over and haven't gotten sick
from food contaminants since I started that method......knocking on
wood...lol....works for me though.
Lisanorth
alan jackson
far Ive never tried
diet changes -but want to. I must have the worst digestive system in the
world. If I have a meal
in the evening the next morning (sorry to be crude ) I can pass intact
mushrooms, peas sweetcorn lettuce and other tasty morcels .Whether they
still have the same nutritional value and taste as 12 hours previous I dont
know but evidently my body is missing out on something. I have started
chewing a lot more but could there be a link to missing nutrients(through
crap digestion) and P ? Do any other P sufferers have poor digestion like
me? another question-isnt HCL hydrochloric acid?
+
lisanorth wrote in message <360A607B...@hotmail.com>...
>Hiya Starr.....Probably HCL isn't included in a classic definition of
>enzyme....most of them are comosed of a protein along with an essential
>mineral and possibly a vitamin....zinc is necessarey for the enzyme that
Paul L. Allen
"alan jackson" <alj...@email.msn.com> writes:
> If I have a meal in the evening the next morning (sorry to be crude )
> I can pass intact mushrooms, peas sweetcorn lettuce and other tasty
> morcels.
You're meant to chew them before swallowing. If they're getting through
intact then you're not chewing. HTH.
--Paul
lisanorth
stomachs, but some of us have more than others....it aids in digestion, and it
decreases as we age. Most of the alternative healing circles really stress the
importance of chewing food very well....digestion starts in the mouth, not only
by breaking the food down by your teeth, but there are digestive enzymes there
as well. I'm experimenting with different digestive enzymes at the moment on
myself.....there are several products on the market that have a combination of
them and also include HCL. No doubt about it that they do improve digestion! If
you have any doubts, just try it! In the long run though, it probabably would
be best to shift your diet to natural foods that improve digestion. Fruits,
vegetables and whole grains are the standards in that area.
Lisanorth
lisanorth
do.........low protein diet is what works for me and lots of other folks.....my
skin cleared completely on a diet of less than 5 grams of protein a day (felt like
you know what and would eventually lead to death, but hey, I was experimenting).
My skin would flare like the dickens on that stuff too!
Lisanorth
Mike W wrote:
> Hello,
> I picked up a protean suplement (included creatin) at GNC to go along with some
> resistance training I was doing. After about a week of the protean I had a
> whopper of a flare up.
> Cheers,
> m.
