Answer 1: They
were originally synthesized in the 1920s and used as the German army was
vamping up their aggressive training programs. They pushed higher variations of
testosterone into their own soldiers by pumping them up with what was then
known as Anabolic-Androgenic Steroids (AAS). Anabolic means to increase and
build up proteins within cells, especially in skeletal muscles. Androgenic
means more development of masculine characteristics. That’s why you’ve seen the
sports industry buzzing about ‘doping, juicing steroids’ abuse especially in
the body-building, weight-lifting and speed sports such as swimming, bicycling
and track & field. An athlete can work out and the recovery time of muscles
is reduced allowing for quicker muscle build up in bigger, faster, stronger
ways than previously ever possible.
In fact, there is a documentary called
“Bigger, Faster, Stronger.” It is another eye-opener of the sports
industry and how profoundly steroid abuse affected so many athletes that were
not aware of the long-term effects they would have in their lifetime. From
infertility to crippling bone density loss, these athletes expose the dark side
of this parallel universe of steroid misuse.
Question 2: When were they first used in sports?
Answer 2: Since Germany had prompted its use in the
early 1930s, it had lots of experience and data on how powerful steroids can
be. They continued with state-sponsored athletic training programs with
estimates of 10,000 athletes using steroids.
In fact, East Germany stole the world stage of dominating sports in the
Olympics for many years during the 1930s-1970s. Unfortunately, the long-term
effects of doping were later realized and caused much anguish for those
athletes with incalculable physical and mental scars. More tragically, many of
them, male and female, did not even know they were being given such powerful
drugs, nor did they have any idea of their consequences.
Question 3: When did they become officially recognized as a medicine?
Answer 3: The research collaboration of two American
doctors from 1930-1938 is where it all started with Dr. E. C. Kendall & Dr.
Phillip Hench. They identified the body’s hormone, cortisol, produced by the
adrenal glands reduced arthritic symptoms and pain. The second step was
realizing another hormone, adrenocorticotropic hormone ACTH, produced by the
pituitary gland, worked to stimulate the adrenals to reduce rheumatoid
arthritis inflammation. These two
doctors received the Noble Prize Medicine/Physiology in 1950. After seeing the
glorification of steroids from the 1930s through the 1950s, there was a race in
the medical world to get the hormones synthetically produced in the most
cost-efficient way. President Truman even signed an Executive Order to
prioritize and test over 5,000 plants to find the closest match! This was our
‘race to the moon’ but in medicine with the urgency to be the first to
manufacture and distribute it worldwide!
Question 4: If hydrocortisone is considered dangerous, why is it so
easily available over-the-counter with TV commercials touting it for any
mysterious itchy, scratchy irritations or rashes, and even for vaginal itch?
Answer 4: Was
hoping you’d ask THIS question! This article on MEDPAGE TODAY written by Alicia
Ault on March 25, 2005, details how Adrenal
Suppression from Topical Corticosteroids Surprisingly High. That was the day after Dermatologic and
Ophthalmic professionals met with the FDA Food & Drug Administration and
had a little pow-wow discussing how high the rate of adrenal suppression was in
various clinical tests. Surprise!
In 60 children, 58% of them had adrenal
suppression after just two weeks of using topical steroids twice per day. But wait…there’s more! 8 out of 10 adults
treated for four weeks also had adrenal suppression. That is more than half. In
fact, the FDA has been receiving reports of severe adrenal suppression since
But in that same meeting of March 2005, the
discussion was about moving topical corticosteroids like the lighter version of
hydrocortisone, so that it may be more easily available over-the-counter at a
higher potency. Despite the FDA rejecting this back in 1957, in 1973 the FDA
said topicals in the range of 0.25% to 0.5% were generally recognized as safe,
and then later in 1990, the agency increased that up to 1% for drugstore sales.
Yet the frequency and availability of topical steroids are increasing worldwide
Question 1: What is this new term I keep hearing of “Skin
Microbiome” or “Skin Flora”?
Welcome to the new-age of skin science! This is going to be fun. We are at the
doorstep of realizing that we’ve been mistakenly killing off our best allies
that were designed to protect us all along. Technically speaking, the skin
microbiome, also known as skin flora, is the family of trillions of bacteria,
fungi, viruses, archaea and tiny arthropods that make your skin their home!
Question 2: So wait…bacteria is good?
Answer 2: Yes!
We like to call them the “good, bad and ugly” for easy reference.
They belong together and if we learn to respect that the bad bacteria can be
eaten up by the good bacteria, then we will be mindful to stop using toxic
anti-bacterial products and hand-sanitizers that supposedly kill 99.999999% of
all bacteria. Sound familiar? That’s because our society has developed an
obsessive compulsion to sterilizing our living environment which has, in turn,
literally reduced our immune systems as a collective society.
Now we realize that our immune systems are
actually made up of bacteria too! They are not all bad or ugly. They’ve been
fighting for us all along, despite us.
Question 3: So do I or don’t I wash my hands?
Answer 3: Hey,
hey, hey. Don’t go from one extreme to another, cowboys and cowgirls! This is
where we all learn from our mistakes of the past and don’t fall for the
pendulum swinging from one extreme to another.
We are smarter than that now. We are going to
not take this new science for granted because we know that a more diverse flora
of bacteria is actually helpful to resist the common dangerous ones that even
the toughest of antibiotics no longer have any effect on them. So we are going
to go back to the basics of washing with good old-fashioned bar soap without
preservatives, and we will just slow down a bit, take a breath and exhale while
we enjoy the lather. We minimize the “Skin Burden Threshold®”of chemicals and additives.
Question 4: What do scientists predict this new discovery to do for skin
Answer 4: It’s kind of like this… We are happy dancing
yet trying to hold down our expectations as we do more research simultaneously.
The findings so far are incredible, and yet we feel the responsibility to guard
the data from hijackers that will come along to exploit the science for
profit’s sake. They need more time, data and research.
Question 5: Is it true that our ancestors had a more diverse bacteria
Answer 5: YES!
Both internally and on their skin. They lived, hunted and played outdoors so
they were exposed to a more diverse spectrum of inhabitants. That boosted their
Question 6: So a more diverse biome will help me boost my immune system?
Answer 6: As the
science of probiotics, prebiotics has shown in our gut systems, yes, our
glorious skin biome, also reflects the same amazing potential. So we can
actually consider the right bacteria/fungi/viruses to help rebalance the
naughty ones from harming us. It’s that simple. The complicated part is
identifying the ratios of each and locations on skin and body and statistically
seeing where the cut-off point is on each of the “good, bad and
Question 7: Is it true that babies born naturally through the mother’s
birth canal actually have less incidence of eczema and allergies?
Answer 7: Yes!
This is further proof
that the baby is inoculated with a deep-tissue massage as it exits into the
world through the mother’s bacterial passageway!
“Babies delivered by cesarean section (C
section) acquire a microbiota that differs from that of vaginally delivered
infants, and C-section delivery has been associated with increased risk for
immune and metabolic disorders.”
Question 8: How can I increase my skin microbiome naturally?
Answer 8: Go
take a hike. Go play in the dirt. Go visit your uncle’s farm and help him tend
the land for a few months! Stop being so metropolitan. Cancel your gym
membership and do cross training in a park, a beach or mountain. Open your
windows and shut off the air conditioner. Eat clean foods without
preservatives, sugar, alcohol and dyes. Resist taking antibiotics unnecessarily
for minor situations whenever possible and boost your body’s natural strength
to fight off invaders.
Stop being obsessive and compulsive with
household cleaning products and use baking soda and vinegar instead. Go back and use simple ingredients on your
skin and hair without preservatives. Be
a minimalist. Get rid of stuff, go outside, travel and explore different
worlds, cultures, and cuisine.
Question 9: Would it help if I increase my gut biome as well?
Answer 9: Yes, since
your immune systems are inter-related your ability to fend off the “bad
and ugly” will be determined by both your gut and skin biomes to attract
the good and mighty. So make friends with people from around the world and
potluck your get-togethers with a variety of dishes from each
“culture.” See that word
“culture” it also refers to the different species of bacteria so
remember a different culture brings a different culture of bacteria and that’s
really good news for your diversity training both biologically and socially
*My work is (almost) done here.
I hope you’ve enjoyed this preliminary journey
exploring the side effects of a widely misunderstood drug and what you can do
to offset potential side effects for your future health.
My next book, SKIN Confessions, focuses more on
re-setting the immune systems with alternative, ancient and futuristic
methodologies. It is intended to inspire you to discover so many other ways to
take control of your health to explore your journey of healing.
Question 1: Can an emollient moisturizer really help with eczema?
Answer 1: Yes –
they have been found to help
reduce flareups and increase complete remission and/or reduction of atopic
dermatitis in high-risk infants.
That’s pretty amazing and the best part…is they are considered to be generally
safe to use.
“Parents and carers of children with eczema
often underuse emollient therapy, essential to repairing and protecting the
defective skin barrier in atopic eczema. Educational interventions delivered by
specialist dermatology nursed in hospital setting shave been shown to improve
emollient use and reduce symptoms of atopic eczema.”
Question 2: Any proof to back it up?
Answer 2: In
2008, a pilot study was
conducted by Dr. Eric Simpson, who was funded by the National Institute of
Health (NIH) and National Eczema Association (NEA). The study included 22 babies at high-risk for
atopic dermatitis. Parents applied an emollient cream at least once a day over
their baby’s whole body, except diaper area and scalp. The result was that only
3 babies of the 22 developed atopic dermatitis within the follow-up period of
547 days. Similar studies of such high risk subjects would have probable
results ranging from 30% – 50% towards the eventual development of atopic
That pilot study has since inspired more
international clinical trials both sponsored by companies with vested interests
in promoting their own emollient use, as well as non-vested academic researchers legitimately looking for
alternative protocols for atopic dermatitis.
Once daily usage of an emollient showed
considerable promise to prevent the atopic dermatitis according to the Barrier
Enhancement for Eczema Prevention Study. BEEP was a multi-center,
international, randomized controlled pilot study. This was announced at the
annual meeting of the Society for Investigative Dermatology.
Question 3: Are emollients safe and are there any adverse side effects?
Answer 3: Of
course, there are always exceptions to every product or medication and allergic
reactions can occur from any particular ingredient. However, generally
speaking, the consensus is moving towards using emollients as the first line of
defense and prevention before prescribing the more risky alternative of topical
steroids. We are moving in the right direction of reassessing the medical
protocols of jumping too soon on the corticosteroid regimes.
of this trial demonstrate that emollient therapy from birth
represents a feasible, safe, and effective approach for atopic dermatitis
prevention. If confirmed in larger trials, emollient therapy from birth would
be a simple and low-cost intervention that could reduce the global burden of
Question 4: Isn’t ELAJ an emollient?
Answer 4: Yes –
it has been called emollient, moisturizer, eczema therapy and the fancy word,
emollience. But the basic premise of ELAJ products is that they are lipid rich
and intensive, without water in the formulation. So it is not a light
moisturizer. The best results have been
found when patients apply ELAJ 3-4 x during a flareup until it subsides within
a week or two or less. Thereafter, apply once a day, preferably after bathing
when body is still warm and dry. The absorption will be more higher. A secondary touch up for the affected area if
there is a tendency to itch at night. More information can be found at www.ELAJnaturally.com .
Question 1: Why was India experiencing a pandemic of topical steroid
Answer 1: This
was due to a cultural obsession with lightening dark skin. This is a sad, social
phenomenon that has to do with racial classification. The desire for lighter
skin tones still has seriously dangerous and detrimental psychological
ramifications among many Eastern, Mideastern and Asian cultures, not just
India. Actors, models, singers, and the general public still deal with economic
discrimination as well as social preferences in marriage proposals to lighter
There were also other factors for topical
steroid misuse resulting from public ignorance, lack of information and medical
negligence. Pharmacies were disregarding the manufacturer warnings while
profitable sales increased each year. The market was saturated with
prescriptions for steroid cocktails of antibiotics and anti-fungals that would
be re-filled and shared among family and friends without any direct supervision
Another factor was that there had been a
shortage of dermatologists in ratio to the country’s population of over 1.35
billion. Most of the dermatologists are located in urban municipalities
completely denying access to so many in the outlying populations.
Question 2: How did the consumers use the steroids to lighten their skin?
Answer 2: They
mix topical steroid cremes that are known to thin skin with a bleach creme to
lighten darker skin tones. That was the onset of an epidemic level of topical
steroid addiction case studies. Since 2008, Dr. Koushik Lahiri and
other doctors started seeing more and more patients that tried to alter a
cosmetic issue, but unknowingly became far more injurious to their skin and endocrine
systems with far-reaching consequences.
It was not an eczema-induced prescription that
caused the topical steroid addiction, but rather a cosmetic craze for lighter
skin tone that triggered a topical steroid addiction epidemic!
Question 3: How and when did India ban the sale of topical steroids from
being sold over-the-counter without a prescription?
Answer 3: One of the first heroic voices in India
lobbying for change was the world-renown dermatologist, Dr. Koushik
Lahiri. Since 2008 he has been a
trailblazer documenting the detrimental history of corticosteroid abuse. Loaded
with case studies, he pleaded to the Ministry of Health and Parliamentary House
in India. His personal mission was to
rescind the law and ban OTC (over-the-counter) sales of any topical steroid
without a prescription. In August of 2016, he finally succeeded with his
original proposal to the Indian Association of Dermatologists called: Stop OTC
Sale of Topical Corticosteroids without Prescription.
He has since been recognized by the
International Society of Dermatology for his work on many fronts to protect
public health and skin care and educating and encouraging international medical
professionals to become more sensitive to the conditions.
He also founded a countrywide initiative task
force to study and publish the first multi-authored international compendium on
the topic: A Treatise on Topical Corticosteroids in
Dermatology: Use, Misuse and Abuse. This medical practitioner’s reference tool aims: “To fill up the lacuna and to contribute significantly to
the dissemination of knowledge about the indication/contraindication, mechanism
of action, ethical use, side-effects and various other facets related to
Topical corticosteroids (TC) have greatly enhanced
dermatologists’ ability to effectively treat several difficult dermatoses. The
available range of formulations and potencies allows them to flexibly treat all
groups of patients, different phases of disease, and different anatomic sites.
Improper/incomplete knowledge about topical
corticosteroids’ mechanism of action, indications, classifications, and
contraindications has produced a rapid rise in the incidence of improper use of
these drugs, which could potentially bring disrepute to this entire group of
Responsibility for disseminating proper knowledge
regarding when, where, and how to use TC both to internists and patients
primarily rests with dermatologists. In this regard, the benefits of rational
and ethical use and the potential harm of overuse and misuse for non-medical,
especially cosmetic purposes, should be clearly conveyed before prescribing
Question 4: Will hydrocortisone ever be taken off the over-the-counter
market in the United States?
Answer 4: That
is highly unlikely due to the powerful wing lobby of Big Pharma. What we can do
is educate ourselves, our loved ones, and report Adverse Drug Reactions to the
FDA and register at www.PatientsLikeMe.com to become a better
informed self-patient advocate! The
doctors in India have taken great strides in causing ripple effects in the
We, in the west, can learn if we choose to see
the parallel universe of topical steroid addiction potential. Albeit, the
original intentions of using corticosteroids were quite different, the results
and consequences have the same endocrine disruption. This provides more
valuable data that can be shared to document the clinical effects of
Coondoo A., Lahiri K. (2018) Topical Steroid
Damaged/Dependent Face (TSDF). In: Lahiri K. (eds) A Treatise on Topical
Corticosteroids in Dermatology. Springer, Singapore://link.springer.com/chapter/10.1007%2F978-981-10-4609-4_13
Answer 1: ITSAN
is a non-profit organization dedicated to spreading awareness about Red Skin
Syndrome, also known as Topical Steroid Addiction or Topical Steroid
Withdrawal. Their full name is International Topical Steroid Addiction Network.
Also they have been known as Topical Steroid Awareness Network.
ITSAN Red Skin Syndrome Support has grown into a
thriving world-wide online community where members share, comfort and encourage
one another. ITSAN serves international populations as a resource for the
individual, the caregiver, and the healthcare provider.
Question 2: How old is ITSAN and how did it get started?
Answer 2: Again,
we are amazed at how one individual’s experience and heartache can turn a
question into a snowball movement and potentially a revolution in less than a
decade. In 2009 a woman started the website AddictedSkin.com from her own experience in Red
Skin Syndrome and her personal topical steroid withdrawal experience into an
international resource and safe zone for so many! Kelly Palace posted her
photos as well as articles and white papers from Dr. Fukaya, Dr. Rapaport, and
By 2012, Palace changed the website to ITSAN.org and
filed for non-profit status with Dr. Rapaport as a co-founder. Soon after, Dr.
Rapaport left ITSAN while Palace continued as president until 2015. Today ITSAN is a member in Good Standing of
the Coalition of Skin Diseases since 2014. ITSAN is now hosting its own
Question 3: How does ITSAN work to get the word out?
Answer 3: ITSAN
advocates for the RSS community by:
1. Being a member of the Coalition of Skin Diseases
2. Member of the International Alliance of Dermatology Patient Organizations
3. Community outreach at the Eczema Expo by National Eczema Association NEA
4. Participating in the American Academy of Dermatology’s Inflammatory Skin
Diseases/Itch Measures Work Group
5. Attending the AAD Annual Meeting and Scientific Sessions
6. Lobbying in Washington, D.C. With the Coalition of Skin Diseases at the
Annual AAD Association Legislative Conference
7. Working toward creating a patient registry to further future research
8. ITSAN has developed a survey to estimate Cortico-Steroid Exposure
(CoStEx) that can help quantify Withdrawal & Recovery experience. The
survey was developed by an MD and a PharmD. It is confidential and would help
those suffering with TSA/W. Here is the link to that: ITSAN SURVEY.
9. They developed a brochure that can easily be printed that can be shared
with your medical team or friends and family
10. They produced a really cute cartoon whiteboard video that easily explains
the whole deal with this crazy phenomenon
Question 4: What’s on the immediate agenda for ITSAN to do more?
Answer 4: To
break it down in steps, they are :
Developing a member registry so that the growing
Facebook support group will be transferred into a database of actual members.
Organizing a webinar series to help offer more
Host one-day conferences.
Question 5: What’s holding ITSAN back from really getting the word out
Remember this is a volunteer organization of actual RSS sufferers that are
barely getting their health and lives back from the tight grip of topical
steroid withdrawal recovery. The passion
of getting the word out there is immeasurable from these warriors that
sacrifice their own time and effort at their own expense. They are only limited
by lack of funds. Many times the volunteers are relying on the $5, $10 and $50
donations from the ones that are already suffering with limited incomes due to
the debilitating condition and not being able to work.
Answer 6: There
is still so much to do to get the word out. It’s a two-part process. One
important aspect is to work on a medical outreach program directly educating
medical practitioners on topical steroid side effects.The second is public
outreach directly to the eczema/psoriasis populations to help them be fully
informed before, during and after the decision to use topical steroids.
Remember it was less than 10 years ago that one
woman’s voice started this snowball movement, and today ITSAN is a lifeline for
so many to make better-informed decisions about their health through support.
Imagine if your donation just happened to be the
spark that helped someone avoid unnecessary suffering…
Answer 1: Go to Patients Like Me to
discover a new online forum where over 600,000 patients with 2,800+ different
health conditions share their medical history, symptoms, medications, and side
effects. All in the hope that others will compare and learn about their
particular condition or treatment, so they make better choices. As patients, we
do not have access to see the true independent clinical research about
medications and treatments. Now you can dig deeper into that important
information. How many people took a certain brand-name or generic medication
and found it useless? Were the side effects of a new drug too risky to deal
with? What other options do you have? You just may find the answers there.
Question 2: Is that information going back to the drug manufacturers and
pharmaceutical companies to know that some medications are good, bad or ugly?
Answer 2: YES!
It did not start out that way. It really was just a forum for patients. But it
grew so exponentially big, that it’s become even more powerful than just a
NOW the big pharmaceutical companies are
actually taking back the statistical information from the website and using it
to re-strategize their own medical research and drug development! This is a HUGE breakthrough for patients!
Question 3: Is the Food and Drug Administration paying attention to this
online site as well?
Question 3: YES!
Since 2016, the FDA is benefitting from direct patient-reported data and
gaining powerful insights to drug efficacy and safety! This is so exciting for everyone. It’s a
win-win partnership for all.
As of 2015, over 110,000 adverse drug reactions
were reported on that site alone. Because the FDA has always struggled with a
huge gap in adverse drug reporting from doctors and patients, now this online
forum is a safe place for patients to share their reactions. The FDA has now taken this site seriously as
a place to survey starting points on market reactions.
Question 4: Has there been any case where PatientsLikeMe.com helped get a
drug recalled or refuted?
Answer 4: YES!
Because of the data generated about a lithium carbonate treatment for
amyotrophic lateral sclerosis (ALS) the same disease that Professor Stephen
Hawking died from in March 2018, they were able to refute results from an
actual clinical trial!
Again…we are here happy dancing at this news that
a patient-to-patient network was about to evaluate and provide more realistic
results than a clinical trial! We think PatientsLikeMe.com should qualify for a
courtesy Nobel Peace Prize in Medicine for helping redistribute the power back
to patients and their voices, rather than relying only on the frequently skewed
clinical trials that have vested interests in more profitable results to
benefit drug manufacturers.
We hope that this platform stays true to their
original intent and does not sell out to the proverbial devil and the deep
pockets that feeds the system. As of the writing of this book, we have not
found any hint of that occurring. However, whenever data is shared, a higher
level of vigilance is needed to make sure that power is not hijacked.
Question 5: Why didn’t anyone think of this long ago?
Sometimes it takes a devastating heartbreak to drive a question into a movement
into a revolution. In this case, it was two brothers, James and Benjamin
Heywood, who were inspired to reach out and find more effective treatment for
the ALS disease that their brother was diagnosed with at 29 years old. The two
brothers just needed a resource to compare notes with other ALS patients, so
they could decide what treatment option would be better. There were no other
resources. That’s how PatientsLikeMe.com was born.
In just one decade since their brother’s death,
PatientsLikeMe.com has grown to be a force to reckon with as a robust and
legitimate resource information platform. We congratulate they Heywood family
and the team at Patients Like Me for their noble mission and their
accomplishments already made to the medical community of patients.
Question 6: How can PatientsLikeMe.com benefit the eczema/psoriasis and
other skin condition patients?
Answer 6: If
more skin condition patients register online and deposit their health journeys
and detailed topical steroid medication experiences, then the statistical
database of pros and cons will grow. Once more data is accumulated, the public
awareness will benefit, as well as medical practitioners to know if their
protocols are working.
Question 7: Has anyone reported Topical Steroid Side Effects or Red Skin
Syndrome on PatientsLikeMe.com?
Answer 7: YES,
YES, YES! As of this book publication
date, there have been 68 patients that reported their own experiences with each
topical steroid they used. In fact, the condition is listed as Red Skin
Syndrome/Topical Steroid Withdrawal. There you have it folks! Where many
medical practitioners have not acknowledged this condition, there is now an
independent platform that does right there, and it is open for everyone to
review. This is just a starting point to provide a safe place to deposit the
long history of topical steroids and efficacy and potential side effects.
Question 8: Is there any way to create a poll or another type of survey
within Patients Like Me?
Answer 8: YES!
YES! YES! They have a large research division within their platform and can set
up an independent survey by contacting the folks at Patients Like Me RESEARCH
tab on their website. They can guide and initiate how they can help to
administer this type of survey. There
are academic ways to do this or with an independent group to get this funded by
grants as well. This is where it all comes together. Dermatology students also have credence to
work with Patients Like Me and their data to help with publishing papers and
Question 9: Is it really anonymous?
Answer 9: A
patient or caretaker can create an anonymous profile on any computer and set up
their health history and medications list(s). They can detail their experiences
with each medication or treatment protocol. It is a brilliant concept to help
share valuable information that would otherwise not be available to patients.If
you’ve read this book thus far, you must know someone that has dealt with
topical steroids on some level. Please forward this information to them and
encourage them to share their experiences on Patients Like Me.
Question 5: Can we really make a difference just by inputting our
individual health issues on a website?
Answer 5: Thank you for asking this magnificent question!
That one question may be the key to saving humanity…no, seriously! There is a
new platform online for patients and caretakers that could be the missing piece
to the puzzle. It was created by two brothers who lost their other brother to
Amyotrophic Lateral Sclerosis (ALS.) When they explored the medical options
available for treatment and what, if any, side effects they had, they found a
huge void and lack of available information. Just like topical steroids! They
needed to compare medications their brother was given and how it fared with
others that were a few stages ahead. What was the statistical average of
survival and what were the side effects? The brothers intuitively knew that
relying on the original clinical test of the pharmaceutical companies was not
wise. After all, those companies had a vested interest in swaying information
in their favor and, quite possibly, were not going to help them in trying to
save their brother.
So they started a website called www.PatientsLikeMe.com.
They created an online system where anyone – patients or caretakers – can share
their true experiences with each drug, medical protocol and side effects with
honest feedback from others that went through the same ordeals. WHAT A
BRILLIANT CONCEPT, right? Here at ELAJ
headquarters, we constantly nag, nag, nag for anyone and everyone with any disease
or medical ailment to register, even if anonymously from a random computer at a
library or hospital to just DO IT! For the sake of humanity, DO IT! For the
sake of clearing our collective conscience to help others in need, DO IT!
Imagine if 70% of patients with eczema or
psoriasis input their information into that database? I can imagine the shivers
of the pharmaceutical executives all the way through my computer keyboard as
I’m writing this. How else can we, patients
and caretakers of those that are ill, gain control back from the dominant power
of Big Pharma? This could be the ONLY
way to statistically get the data and leverage back in our favor.
In light of the latest concern about opioid drug
addiction and abuse, imagine people sharing their stories. Cancer treatments
and the recurrence ratios and hearing from people in similar cases describe
their actual health journeys? This is why I think this could be one of the keys
to saving humanity. It has become a beacon of light for so many people.
Here are some of the data points that are
priceless and can help all of us. Can you see how this is so powerful? THIS is
the game changer we’ve all been looking for all these years. If the FDA had
stepped up their own game, the ADR Adverse Drug Reaction reporting system could
have been this, but instead it’s a hidden web of sticky data that we do not
have access to, which we should have had all along. Now, Patients Like Me is where we can go and get some answers.
Obviously, it won’t work until it gains more traction and you, me and every
grandma deposits our experiences and data into it. That’s when it will gain
more significance. But at least now, there is hope.
These are some examples of
the types of information that can be
1: My doctor responded to my questions about topical steroid side effects with
an answer that I, “suffer from topical steroid phobia,” is that
1: We hope that gathering more
comprehensive information to make an informed decision does not constitute
‘phobia.’ Our goal is to fill in the blanks of where the medical industry has
not done due diligence in informing their patients properly. Until recently,
many doctors minimized the potential risks and failed to communicate them to
patients. This book intends to open the discussion wider to include more
resources for further research for both patients and medical practitioners.
The worst possible scenario is to have an extreme pendulum
effect. The pendulum swings from one extreme to another and they are on
opposite spectrums. We humans have a tendency to run the other way if we sense
danger as part of our flight or fight instinct. But we don’t have to run in the
opposite direction. Corticosteroids can be effective when used carefully and
with knowledge of side effects and a well-thought out plan with your medical
2: How can I balance my fear of side effects with the necessity of taking them
2: You’ve made it through this book
this far, you are already well-informed and cautious. We are so proud of you.
Now this is where good reasoning skills kicks in. You are aware of the side
effects. You know what to look for and most importantly, you know that you can
out-smart steroids by keeping your adrenals in check. It’s all about timing and
quantity of application and potency. The general consensus is that 2 weeks is
the demarcation point of giving your skin/adrenals a break. This allows you to
keep trying to track and test where the original problem comes from and
eliminate the cause – whether it be an allergic reaction from a skin irritant
or an auto-immune response stemming from your gut or other systemic reaction.
You also have resources to check like PatientsLikeMe.com
and online facebook chat groups that have veteran warriors that have been
through the trenches of it all.
You also are now aware that alternatives to steroids like
emollients can actually help bridge over the difficult flareup stages. The
website www.ELAJnaturally.com offers variations of emollients and
bath soak alternatives to bleach.
3: There are other new drugs that I’ve been offered to participate in clinical
trials and free medications. How do I decide to take them?
3: The same resources in Question 2
would apply here. Do your research. Some of them are identified as
non-steroidal, yet have immune-suppression similarities. Again, those Facebook
groups have folks that have already been down that road and can offer some help
and more resources.
4: This paranoia of topical steroids is all over the internet. How can I get
through the noise?
4: Be your own patient advocate by
keeping your health journal to document your journey. Everyone reacts
differently. Everyone has a different health journey. So keep track of each
medication, each reaction, each flareup with pictures that will help you
document a better case to evaluate what is working for you. The overload on
your memory is too much to rely upon when trying to decide if the next course
of action is good or not. Once you arm yourself with a well-documented picture
diary, you will be a better patient and your doctor will respect you more and
consider your wishes more carefully.
By doing this, you prove you are a force to be reckoned
with and any doctor will be more inclined to strategize better with you. Furthermore, a full team of doctors,
nutritionists and alternative doctors will help bring more discussion and a
cross-section of options. It may get overwhelming but remember, you are
documenting everything carefully and that will carry you forward through the
decisions that need to be made. You’ve got a phone to take pictures and keep a
chronological history that matches your medications. That’s gold!
Question 1: Are fragrances harmful? Why did my doctor tell me to not use
anything with fragrances?
Answer 1: Let’s
go back in time, shall we? When a deer in a forest wants to leave a text
message for another deer to follow her around, she would spray trees with her
scent, a musky flavor that was irresistible to another deer. Cavewoman wanted
to attract a certain caveman, she would surround herself with beautifully
scented flowers to confuse caveman that those scents belong to her. Caveman
would either be attracted or repulsed by her and/or her scent. All of us have a
distinct signature smell. That’s why your dog sprays and sniffs every other dog
along his walking trail. Even fruits and flowers emit a scent that is basically
a composition of plant hormone or pheromones. So scent has been in all of us
and used as a sneaky seduction tactic by many species of animal, plant and, of
course, us cavefolk.
Question 2: What makes scent? And by the way, you did not answer my first
Answer 2: Okay,
okay, I’m getting there. Scent is actually made from hormones. Why? Because you
are attracted to that powerful pheromone. So every perfume maker from here to
the old perfume district in Paris is going to try and seduce you by emulating
the natural scents like a deer desperately following a musky odor or a
cavewoman communicating her readiness to mate.
But nowadays, it’s not cost-effective to crush a
ton of roses to make 2 ounces of rosewater or your favorite and expensive eau
de toilet. So they make perfumes, colognes, air fresheners, and all the
additives to cosmetics and laundry detergents artificially. That is
torture on our endocrine system. It has become a buffet of chemicals instead of
natural fragrances that delight our senses. Now the senses are overloaded with
foreign chemical compositions that make our endocrine and immune system ‘feel’
like they are being attacked.
In the book “The Secret of Scent”
by Luca Turin, the author details how the same exact perfume from the same manufacturer
no longer smells the same as it did 50+ years ago. That is because almost all
of the manufacturers have no choice but to scale production to meet economic
profits. Sorry. Perfume was good while it lasted.
The idea of ‘wearing flowers’ came in the
Victorian era when men wore boutonnieres and women wore corsages to offset body
odor! Smart idea! Not far from the cavemen ideals, we have evolved with
solutions over the years. However, now we have to find an alternative solution
to the chemical warfare that is artificial fragrances.
Question 3: Why is that synthetically made hormone fragrance is actually
Answer 3: So
when caveman wants to smell you, but instead he only smells roses, he is not
getting the full picture of your health, your DNA, your bacterial composition.
Let’s just say – it’s a tricky way around seduction, and more like deception.
His natural immune system is looking for a certain combination of DNA, bacteria
and hormone balance to match his own and make a more diverse and stronger
spectrum of immune systems for his future 27 children. That’s what we call
attraction. It really is a chemical reaction beyond basic flirting and good
But the problem is that when you apply
artificially made fragrances, they are made with synthetic hormones, like
estrogen-mimicking compounds. Once your body absorbs them, the body has to
readjust its own estrogen and other hormones because it can’t have too much of
a good thing, right? That’s exactly what you’ve learned from this book by the
parallel example of topical steroids being a synthetic hormone.
So your own hormones are going to slow down in
production. Your endocrine system goes into snooze control and keeps hitting
that button to go back to sleep. Meanwhile, you are enjoying that plug-in air
freshener with the latest pumpkin, bourbon, cinnamon apple pie that are just
basically a group of fake hormone molecules. But your body has to work around
this influx of hormones coming in your nostrils and through your skin!
Again, it’s sensory overload on the your poor
endocrine system. It’s so sad. And your future 27 children? You know your body
is going to be flooded with those fragrant hormones in that uterine swimming
pool of yours, right? For the first time in history, the umbilical cords of
newborns are being tested to find dangerous levels of BPA – Bisphenol A,
another dangerous synthetic estrogen faker!
Question 4: So no fragrance, right?
Answer 4: Yes.
No fragrance. Thank you. This is really important.
Question 5: Are you serious?
Okay…obviously I’m not done here. Did you know that perfumers, cosmetic or
personal care product manufacturers do not have to disclose what’s in a
fragrance? Sad, but true. Why? Because the fragrance lobby is HUGE and
POWERFUL. So they decided that their “fragrance molecules” are their
proprietary intellectual property. That is called a Trade Secret. Therefore
they were able to play around that requirement of labeling what’s in your
So when a sneaky manufacturer wants to put
something in their formulas that they do NOT want to list or alarm you with,
they can just include that in the “fragrance” and no one can ask
what’s in that and you are subjected to some serious potential toxins.
Good luck with that. So keep those plugin air
fresheners, scented candles, laundry detergent going and go on with your daily
routine of using personal care products loaded with fragrance.
Question 1: What does my GUT have to do with my skin?
Everything! Absolutely everything. We are in a symbiotic relationship with our
gut microbiota. The gut microbiota helps balance metabolic and immunological
tasks. The most common illnesses triggered by gut irregularities are
inflammatory bowel disease, gastro-enteric infections, irritable bowel
syndrome, obesity, cancer, liver disease, allergic and autoimmune diseases such
as eczema and psoriasis.
Wait…what? Eczema and psoriasis because of gut
problems? YES! That is correct. This is where it gets interesting.
Question 2: So between my gut and skin, you’re telling me I should have
Answer 2: YES!
The more diverse your gut bacteria, the less allergies you’ll have, the more
enzymes will digest everything like a magnificent garbage disposal! The wider
spectrum of bacteria you have, the better your chances of, oh and get
this…you’ll even smell more irresistible, increasing your chances to find a
more compatible mate also with a diverse bacterium so that you can have 27
healthy children! Isn’t this amazing? So go play in dirt! Go to a farm and dig
up some manure! While you’re at it let’s get some natural probiotics in our
system the right way.
Question 3: I’m so confused with this PROBIOTICS stuff – where do I
Answer 3: So if
you’ve ever taken antibiotics – you are a murderer. Anti-Biotics are
Anti-Bacterial, and they are designed to the living bacteria. The medical world
is now waking up to being more careful to not prescribe antibiotics unless it
is an urgent situation. But now you need
to go redeem yourself in front of your gut garden and replenish all that good
bacteria you wiped out with antibiotics.
If you eat lots of clean fruits and veggies,
congratulations that is prebiotics.
Those coat the lining of your intestines with powerful enzymes and
fiber. But then you need to step it up and actually get the living bacteria
into your system. How? With fermented foods such as non-sugared yogurt, miso
soup, Korean Kimchi, sauerkraut, certain types of pickled veggies, and Kombucha
teas. My suggestion is to create a
variety at every meal and keep exploring.
Question 4: How do I protect my gut flora?
Answer 4: Oh, come on, you know this. Eat clean. Sleep
well. Poop like a king… Rinse, Repeat. In between all that, play and exercise
as if your life depended on it and then focus on even better eating habits. It
really does come back to the basics. Be a minimalist with what you put on and
in your body. You don’t need to be a high maintenance diva or metro-dude with a
bathroom full of personal care products that sabotage your skin and gut flora.
Question 5: So now I have to protect my skin flora too?
Answer 5: Yes!
Anything you apply to your skin gets absorbed into your blood stream in about
26 seconds. So did you think your skin was just about making you look good?
Wait till you hear all the heroic things skin
really does in SKIN Confessions. You’ll think twice next time you pass by that
body lotion store you love so much that smells like pink fruity-tutty bubblegum
flavor. Those moisturizers are taking their toll on your skin and endocrine
system. This is important because all those fragrances are actually synthetic
hormones. Now that you’ve been reading this book, does that ring an alarm bell?
What did we learn about synthetic hormones and how they cause chaos in our
bodies? Remember, our goal is to become
a minimalist and not burden our skin’s threshold.
*On a personal note, this subject is near and
dear to me. Poop science was ingrained in me as a little girl. Whenever I would
come down with a fever, my father would inspect my breath and ask to see my
poop. It was awful and embarrassing. The first thing he’d do was tell my mom to
give me a suppository and make sure I’m pooping within the hour! Then rest,
fluids and NO TYLENOL, NO MOTRIN, NO FEVER REDUCER! They encouraged my fever
and made sure I sweated out the fever in one night. Essentially, they were
‘feeding the fever, starving the cold.’
Growing up in America, I didn’t understand why I
didn’t have normal parents that coddled their children lovingly with a simple
pill to reduce the aching, fever and cold/flu symptoms like I saw on TV
commercials and The Brady Bunch. But then I grew up. Now I’ve come to realize
my Circassian parents and grandparents were champions of ancient immune-boosting
hacks from the Caucasus mountains of Southern Russia. Among those hacks was the
invention of yogurt, the fermentation of milk over 3,500 years ago. Recent
archeological evidence found in gravesites preserved in perma-frost revealed
ancient tombs with a funeral feast that included fermented milk that turned
into yogurt. So for the record, it was Circassian yogurt, not Greek
These were among the simple basic tactics to
keep everything flushing and moving along. The first step at the sign of any
cold or flu symptom? Check your poop. There you will find the answers to the
universe. No really. The answers to the universe are in our poop.
Our digestive history, our gut flora, our
magnificent bacterial composition is EVERYTHING! Scientists
are now racing around the world collecting poop samples from indigenous tribes
in remote areas. In their poop is some of the most diverse bacteria! It’s called the HMP Human Microbiome Project.
It is the largest collection of data right from the source…Isn’t this
My book, SKIN Confessions, details so much more
about this fascinating subject!
Question 1: Are hand sanitizers safe? Shouldn’t I use anti-bacterial
Believe it or not, using a normal bar soap with lots of agitation and movement to
lather for 45 seconds seems so counter-intuitive, but achieves almost the same
results without killing your skin microbiome.
As a healthcare provider, there are different
recommendations, and now hospitals are quickly making a U-Turn on the harsh
chemicals because of the high-risk factor for their own employees. When nurses
and medical practitioners develop skin/hand problems, it directly affects their
bottom line because of the many worker’s compensation claims from absentee
employees. Once their hands are compromised, they then become even more
sensitized to the rubber and latex gloves, and they can’t do basic medical
procedures. Add to that equation, the risk of their immune systems being
jeopardized by going through the vicious cycle of topical steroids and another
perfect storm is brewing.
Question 2: What’s the big deal with my handy purse sanitizer that is so
Answer 2: They
are made with at least 62% Alcohol or Triclosan – a very harsh chemical that
the Food and Drug
Association (FDA) issued a final ruling that these ingredients are
not as safe as previously thought. They recommend regular bar soap with water
and agitated scrubbing is just as good.
“Consumers may think antibacterial washes are more
effective at preventing the spread of germs, but we have no scientific evidence
that they are any better than plain soap and water,” said Janet Woodcock, M.D.,
director of the FDA’s Center for Drug Evaluation and Research (CDER). “In
fact, some data suggests that antibacterial ingredients may do more harm than
good over the long-term.”
Question 3: What about public restrooms?
Answer 3: For
those of you that are already sensitized by any eczema, Contact dermatitis,
psoriasis or skin lesions, please consider carrying around a little Ziplock
baggie with a small travel-size bar of soap like DOVE for sensitive skin. That
seems to be the prevailing go-to for those with severely sensitive skin. Don’t
trust public restrooms that opt for the cheapest possible anti-bacterial soaps.
Why did my doctor suggest I take BLEACH BATHS?
Answer 1: Probably because your skin looked like it was getting infected from
deep scratching and open lesions. We have to forgive ourselves and our medical
practitioners. They were trying their best with the information they had at
that time. Medicine evolves.
Question 2: I
thought all bacteria was the enemy and my job was to kill 99.9999% of bacteria
– so what happened?
Answer 2: The science of discovering GUT
bacteria came along in the last 15 years and that changed everything in
medicine. We now are trying to study our internal flora, our gut bacteria as an
organ in of itself! And our skin microbiome as another organ. We are made with
more bacteria than we have DNA cells! So yes, bacteria are a living part of us
that we are at the doorstep of where quantum physics was upon discovery.
Was bleach bad all along?
Question 3: It may have served a purpose,
however the current research does clearly project that protecting our diversity
in microorganisms may be serve our overall health far more than trying to kill
off the bacteria.
So let’s focus on the body’s amazing healing power instead of the
sense of remorse that question brings now that the current science proves our
skin microbiome needed to diversify instead of nuclear bomb it? Let’s stay
positive and rejoice in the body’s natural healing ability and commit to
detoxing and replenishing the good bacteria.
What else can I soak in to gain some relief?
Answer 4: Mineral Salts like those of ELAJ Salteral that are loaded with Dead
Sea Salts, Magnesium, Zinc, Epsom, Honey Powder, and Algae Powder. They have
been incredible for helping those with full body flare-ups and itching spells.
They also work as an exfoliation scrub onto skin that is not compromised, but
rather those plaque areas from psoriasis and lichenified skin. ELAJ Salteral
can be found at www.ELAJnatural.com.
Another alternative is Apple Cider Vinegar. The gentlest of all is
adding colloidal oatmeal to a bath. Be careful with essential oils as they may
be too harsh. You can experiment with the most minute concentrations, a little
at a time, and test your tolerance level and benefit.