Tuesday, July 24, 2012

"Red skin syndrome" hyped, but real

A while ago I got a news alert linking to a disturbing press release claiming that topical steroids, commonly prescribed to treat eczema, were in some cases intensifying disease symptoms.

From the release:
Using mild over-the-counter hydro-cortisone creams to a range of prescription steroid creams, one's skin can become addicted in less than two weeks of usage and develop worsening symptoms that appear to the [sic] be simply spreading Eczema. However the problem is worsening from the medication.
Press releases usually contain news. So what is news here? The release was published by a 501 (c) (3) nonprofit called “The International Topical Steroid Addiction Network,” founded by a dermatologist, Marvin Rapaport, and Kelly Palace, a former patient of Rapaport's. Rapaport practices in Beverly Hills, California.

It's not news that strong steroids are bad for you. But I hadn’t heard of the phenomenon described by ITSAN before. As I always do when I hear of unfamiliar scientific or medical concepts, I turned to PubMed, the NIH’s database of published papers. I performed searches for "topical steroid addiction," "corticosteroid addiction," and "steroid addiction." In my experience, well-established concepts leap out of PubMed with thousands of hits.

Topical steroid addiction just barely surfaced above the noise at first. It’s hard to find, but it’s there—in three papers by Rapaport. 

But then, as I dug around, more results began to appear. The problem is that the papers all use different words to describe the central condition, which (on the face at least) is most precisely labeled “steroid-induced rosacealike dermatitis,” commonly called “red skin syndrome.” A review for practicing physicians can be found here.

The first case of red skin syndrome was reported in 1957. So “topical steroid addiction,” as described by ITSAN, is a real, if not new, condition. I don’t know how many patients it affects, but according to some PubMed results I found, it is well-known in India and China, where it may be emerging because stronger steroids are now being more widely prescribed--and perhaps more casually used.

In my opinion ITSAN’s site is garish and alarmist (do they really need that banner image of a crying girl?) and their focus on Rapaport comes across as promotional. In the "About Us" section, they ask:
Could the reason for this huge increase [in the incidence of eczema in the West over the past 30 years] be the use of topical steroids causing Steroid Induced (spreading) Eczema, an iatrogenic (adj.where a medical treatment causes a condition) skin disease?
In a word: no. But the information on the FAQ section of their site looks useful. If you think topical steroids are your biggest problem, then why not stop cold turkey and see if you experience the flareup and cooldown that seem to be typical of addiction?

28 comments:

  1. Great post. I noticed the large amount of press around this "issue" suddenly and based on personal experience, I wondered if it was just hype over a made-up condition (I've used varying strengths of topical corticosteroids on and off for my entire life and never experienced anything like this). The site seemed rather silly and unprofessional and I found the use of the term "addiction" to be problematic. True addiction often includes a mental addiction, which isn't the same with a topical cream the way it would be with a narcotic. So, taking a break is a easy way to address the perceived issue. It does seem rather alarmist and it's unfortunate that they're taking advantage of the existing misconceptions about topical steroids to collect funds.

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    1. Given the Hell that people go through, I would not call this condition "hyped" - if anything, I would say ITSAN is understated. What is missing on the crying girl's face are crusty scales flaking off of horribly thickened, red, painful, and insanely itchy skin. The relentless itchy torment can, and does, deprive people of sleep. Imagine being the parent of a child who screams in torment - for months - because the relentless itch that worsened and became unbearable on steroids just won't stop. That is, it won't stop until the steroids are removed and the skin can finally heal itself.

      Make no mistake, for the skin this is an addiction. And, like any other intense addiction, coming out of it is Hell.

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    2. My dermatologist, who spent many years studying atopic dermatitis at the NIH and who is a professor at the local medical school used the term "addicted to steroids" to describe my condition. He has no affiliation with or even knowledge of ITSAN. When I told him I had only used the topical steroids for about two months, he said that was "plenty" of time to develop an "addiction."

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    3. Hi k.Lorraine what's the name of your doctor and what city is he in? You can email me at spanakopitayum@gmail.com

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  2. Thanks for the articles and research. I stopped the steroid creams beack in novemeber and am now entering my 9th month of withdrawal. I am almost healed. You can see my photos on my blog at www.topicalsteroidwithdrawal.blogspot.uk

    I agree that this condition is "hidden" due to the fact that the medical establishment can't seem to agree on a name for it! in my research I found about 10 different names, including: topical steroid induced rosacealike dermatitis, red face syndrome, steroid rosacea and so on. it makes it hard to search and find articles on the subject.

    The reason the condition is prevalent in India is due to the unregulated use of steroid creams as skin lighteners. Many potent creams can be bought OTC.

    It is important to differentiate RSS from normal eczema, although many with RSS originally had eczema, which is why they started steroids in the first place. Like you say, not everyone who uses steroid cream will end up addicted, but I think that the problem is more commonplace than you think. Current estimates are that about 20% of regular steroid cream users get addicted.

    I disagree with the comments made by atopic girl. If you have ever seen photos of people going through steroid withdrawal, you would understand the reason for the hype and alarm. The rash of withdrawal is a lot more severe than eczema. It burns and in some cases can even be life threatening (a 16 year old girl in the US was admitted to a burn unit and Dr Albert Kligman reported the death of a child in 1975 due to abrupt cessation of steroid creams).

    Itsan are not scammers or money grabbers. How can telling people to stop using something generate any cash for them? The site may not be the greatest visually,they are not professional web designers, but these people are passionate about their subject. I also disagree with the comments about Dr Rapaport. The site references him because he has written extensively on the subject. As for myself, I live in the UK and have never met or spoken to the man.

    You make a good point about stoping steroids to see whether you get rebound. it is the easiest way to see if your skin is addicted. Rebound usually occurs within a week of stopping the steroid creams and is characterised by a red burning rash.

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  3. My wife is currently suffering from this condition and there is nothing in the least exaggerated on the ITSAN site. If anything, it's worse than described. As for Dr. Rapoport: a) she contacted him by e-mail, he answered promptly with useful information and did not suggest she come to see him or in any way set up a doctor patient relationship with him b) he shares new information for free on the website, whether it's tried and successful or only a possible new option. Nowhere does he ask or even suggest that he be paid.

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  4. Atopic girl, firstly I am not knocking you but you need to understand the condition before you can make any judgememts.
    Again ITSAS is only collecting funds to help with the cause - they are not collecting any profits. Yes you are right that using steroids will not have a lasting effect on everyone - this only affects a small population of people who have an atopic predisposition, if you had eczema to begin with and were prescribed steroids to help with it. I never had eczema in my life until 3 years ago - I was prescribed a strong steroid cream to keep a rash under control behind my legs - as time went by this slowly spread all over and I had to keep using the creams, upon cessation my entire body would turn red but resuming the creams but get rid of it, when you say addiction is a 'problematic' word I beg to differ, when I used to be on my last tube of cream and my next appointment with the derm was not for another week or another month I would panic as I knew the all over rash would be back if I did not get a refill quick - I would squeeze the tube dry just to get the last drop out- if that does not sound like addiction to you then I dont know what is - most of the people in this predicament have dealt with this exact issue, our group only started with a handful of people when this was first discovered by Kelly, this condition now coming to light has brought so many more people who are going through the same condition after cessation of steroids, this is no joke, its a living nightmare and I would not wish this withdrawal process on anyone - it can takes months if not even years for the body and skin to regulate itself back to normal after cessation, the girl crying on the cover of ITSAN is a good representation of what all of us are enduring - you really cant imagine what people are going through with topical steroid addiction and withdrawal - this includes youung children who have been slathered in steroids by their GP's for years and so many of them now are healed after cessation - we have proof that this is heals, people have blogs with pictures and progress that is prooves this -its a rough path during witdrawal but its all real - sorry to sound harsh but this really is no joke.

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  5. That picture of the crying girl is accurate... I've cried enough tears to know what I am talking about.

    For a person like myself, who never had eczema, who (after much thought and research) realized that I had a nickel allergy that was treated with topical steroids and in less than a month, I had massive red skin outbreak all over my body. At the time, I didn't know I had a nickel allergy and no doc seem to pick up on that.

    Recently, the all nickel wound was acting up and went back to the topical steroids and BOOM, red all over again. I believe some people are super sensitive to steroids and I believe it is a lot more that is currently known. No matter if it is "corticosteroid addiction" or "corticosteroid sensitivity" doesn't matter... Either way, it's hell and for me, it's been debilitating.

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  6. All I have to say to the poster of this article and "Atopic Girl" is, I hope you never get it! It's a terrible condition. Also, FYI, addiction doesn't just manifest mentally, but physically too, totally wrong info. by Atopic Girl.

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  7. i can assure you my son is going through topical steroid addiction and it is hell!! if u would like to see his story here is his blog. It is as bad a that little girl screaming on itsan web site!!!!! http://klinestopicalsteroidhell.blogspot.com/

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  8. I used topical steroids for 2 months under the supervision of a MD and what I experienced after stopping the steroids has been absolutely horrible, and months later now I have seen very little improvement. I really don't understand how someone can say that going through topical steroid withdrawal is "over-hyped", when the pictures and detailed experiences paint a drastically different picture. And you're right that this isn't recognized as a legitimate condition simply because the symptoms of RSS appear to be similar to eczema, or dermatitis, and the first thing doctors want to prescribe are steroids. I also think that doctors are very reluctant to diagnosis RSS because if they do they create liability issues for themselves. Think about it, if a doctor diagnoses a condition caused from medications they over-prescribed, doesn't that make them at least partially responsible? And one of the goals of ITSAN is to have warning labels placed on all steroid packages, something I am personally all for.

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  9. I have been using steroid creams for 20 years and they stopped working, I coincidentally had a girlfriend recommend Dr. Rappaport (she sees him for acne) and for the first time since I was 13, he told me I had steroid addiction.

    I am off the creams and have been feeling anxiety and worse eczema than ever with some good days here and there, overall it is getting better but spreading. This is the cycle and I am going to stick with it.

    I had no idea Dr. Rappoport was associated with ITSAN, he never mentioned it, never told me to use it as a resource. Steroid withdrawl is different for everyone and after 3 months of terrible "allergies" I am a believer that the steroids have seriously affected my skin and as a result I am hypersensitive to things that never affected me before, gluten, dairy, processed foods, alcohol...after reading enough entries on support groups I now know what I am dealing with. Thanks to all those people who posted and good luck to all those recooperating.

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  10. These articles and blogs are truly enough for me for a day.
    Dermatologist Marietta

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  11. "Hey, love the blog. I think this post is well worth revisiting; ITSAN have a new logo and hundreds more members now (but, sadly, still very little funding to get the word out). I feel this is an especially relevant time given that the NEA are not only getting further involved with steroid manufacturers (http://www.prnewswire.com/news-releases/upsher-smith-joins-the-national-eczema-association-to-take-action-during-eczema-awareness-month-170971971.html) and (imo) thus clouding their unbiased stance on the use of topical steroids, but also censoring the comments of Red Skin Syndrome sufferers in their forums. I would be interested to hear your thoughts. Thanks"

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  12. I'm not convinced that steroid are harmless, and even less convinced that it's been given a serious look at in this article. Beyond the alarmist impression of the ITSAN group, there's been serious evidence that steroid addiction/ dependency and steroid-induced eczema is a legitimate condition based on Dr. M. Fukaya's and Dr. M. Rapaport's studies. I think that should require little more than a glance at a single website.

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    1. BTW I don't know the author but I think that when people suffer from something for a long time, and possibly find something that works.. they consider contradiction "alarmist" because they have had no effects on them or anyone they know personally.

      Just my opinion, and I have had my fair share of steroids, and don't like taking them at all

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  13. I know from personal experience that this ain't hype. In 1996 my wife spent 2 1/2 months in the hospital essentially detoxing after the steroids she had used for years stopped working. She was barely urinating and, meanwhile, had developed a rash all over her body -- her symptoms were very similar to photos on Dr. Rapaport's website. She was so sick, I didn't think she was going to make it. In Japan they call it a 'rebound', and its a well known side-effect of prolonged steroid use among a sub-population of sufferers. My wife convalesced at a special unit of the hospital set up expressly to treat 'datsu-sute' patients going through this syndrome--which is to say, units like this are fairly common in Japan, especially in the Western region of the country. Meanwhile, there are also outpatient clinics that cater specifically to folks trying to manage their disease w/o the use of steroids: the famous one in Tokyo is Fujisawa, which is where my wife goes. My skepticism is in the direction of the medical-industrial complex. Big Pharma is a business, and scientists aren't above conflicts of interest. There's obviously a lot of variability among the population of eczema suffers: I listened to a talk by a doctor from Ohio the other day and and he identified three pathogenic profiles, one which he termed 'airborne' ... anyway, Dr. Rapaport is on to something.

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    1. Wow- so sorry to hear about your wife. I am glad that she is doing okay. My daughter was 3 1/2 years old when we learned about topical steroid addiction or rebound as you refer to it. She went through a horrifically painful withdrawal for 6 months, and started healing in teh 7th month with complete healing at 9 months meaning she didn't even have any 'eczema' on her body - her skin still to this day is 100% itch free, soft and clear. I think the problem is when you use steroid creams, you only suppress what the body is trying to let you know is not sitting well with it. Once you stop steroid creams, at least in young children, you are better able to figure out the possible offending triggers.It is unfortunate that Western Medicine is so quick to write out a prescription for topical steroids, even oral.

      Had I left it up to my daughter's doctors she would still be on steroid creams today, miserable and would've been on a total of 3 courses of oral steroids had I just gone along with doctors - all this by age 3 1/2! We thought she was allergic to everything because when you are on steroid creams and addicted, and withdrawing, your histamine levels go nuts- she reacted to everything and they told me she was just a highly allergic child. Well, as it turns out, she is only allergic to eggs, dairy, and Oak/birch trees. She even tolerates dog dander in moderation now, something we thought she was highly allergic to.

      Dr. Rapaport is definitely on to something and I applaud him on standing up to the rest of the medical community and big pharm companies which you are so right about - resaerch in my opinion is compromised because of money. Your post is so well written (thank you for sharing!)

      Everyone in the medical community gives Dr. Rap such a hard time, but I always like to say, 'don't shoot the messenger'. As history has shown, especially when it comes to the evolution of modern medicine, there are stages one must go through in order to be heard and for change to take place. It is often those 'fringe cases', 'lunatics', and those labeled as being "a little out there" (as has been said about Dr. Rapaport) who are the first to initiate change. First they are ignored, then laughed at, then resisted, then finally taken seriously - then a new truth evolves. It saddens me that this real condition is not acknowledged by most the medical community and few doctors show more than a passing interest in learning or even hearing about it. There are many others out there still suffering from this debilitating condition who would benefit from open dialogue.

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  14. Thanks for your comment. Would you happen to have a web reference for this clinic in Fujisawa? I searched for it but couldn't find anything. I am trying to find out where the leading centers are in Japan so I can add them to the Eczema Map Project.

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  15. Hi I was reading your blog because I seem to have eczema that is not going away on my elbow, while my hands are clear.
    I was diagnosed maybe 3 years ago at age 28 and told most likely due to severe stress.

    I also have another condition that required oral steroids once in awhile, and injections (epidural).

    My GP gave me a steroid cream that my dermatologist disagreed with, and gave me a stronger one, which worked on my hands in 3 days. Basically his opinion was that the GP gave me something very weak that would be used long term, but this cream only for a max of one week. I have not had any reactions, but my sympathy with anyone who did or suffers.

    Maybe a good word would be "dependence" not addiction. In narcotic medication, muscle relaxers etc someone can be physically dependant and go through withdrawal but not addicted, which is more mental (and usually means consuming more than prescribed)

    Some people on here mention rebound effects, and this is common with some pain syndromes, where certain meds (Vicodin, Norco esp) cause rebound pain and have nerves almost flare even when the pain is totally gone.

    Good luck to everyone facing this conditions, and I love the blog!

    Eve

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  16. Thanks for writing about ITSAN and raising more awareness about this horrific skin condition. Call it/name it whatever you want, but I am glad we can all agree that the condition is real. I don't think a debate on what to call/name (steroid 'addiction'), a side effect of steroid creams should give people/doctors/the medical community a reason and excuse to dismiss it all together. That would be foolish and is tragic for so many who suffer from this side effect of steroid creams (many who are simply unaware and don't know they may be suffering from TSA - many who are children)

    Pharmaceutical companies need to be held accountable for putting a warning label on their beloved drug. The organization's name - ITSAN- includes the word 'addiction' after much discussion(which included consulting with a medical doctor who specializes in addiction, as well as Dr. Rapaport). And yes,there is both a psychological and physical component to addiction-addiction is not just mental as someone stated above-but whether steroid addiction/Red Skin Syndrome/steroid induced eczema/steroid addiction syndrome is called 'addiction' or 'dependence', there needs to be more studies done, more discussion about this topic - more awareness...and if the medical community decides to rename it, so be it. At least that means they will be talking about it. In the meantime, the FDA can go ahead and slap a warning label on the tubes that are even sold over the counter now. I am not convinced myself that 'addiction' is the right word or best fit for it.

    I personally don't like to say my five-year-old daughter suffered from 'steroid addiction' because sure in our society, the word 'addiction' has a negative connotation to it - I would love to be able to call it something else, but there are many medical terms and conditions I think people would like to rename - don't want to miss the point that the condition exists and needs to be acknowledged by the medical community as a whole - and pharmaceutical companies and influential organizations like NEA.

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  17. Other research articles out there refer to the condition as 'steroid addiction syndrome', 'steroid withdrawal syndrome' which implies addiction, prolonged rebounds, etc. The reality is my daughter went through a horrific withdrawal from topical steroids (used as directed by the 10+ doctors we saw - standard treatment protocol for Kaiser healthcare system here in San Francisco, Bay Area and the rest of California). Doctors need to be educated on this side effect from prolonged use of steroid creams - it is common practice to instruct parents to use these creams/ointments on their children to manage chronic skin issues for weeks, months and even years at a time - often without much of a break in between. And...even worse, when a parent, such as myself challenges what they are saying is 'safe' and respectfully disagrees with their treatment protocol, I am told there is nothing more they can do for my daughter as steroid creams are their only answer???Some parents have even been told that they are being negligent by stopping steroids and they have to meet with a CPS worker.

    I learned about topical steroid addiction/Red Skin Syndrome from ITSAN.org and am forever grateful to Kelly Palace (co-founder). After going against all recommendations by doctors and stopping topical steroids, my daughter was 100% cured of her itchy all body rashes by 9 months off steroids and has had clear, itch free skin since (rashes that nearly ruined her life). It will be 2 years this August since stopping steroids and she still has clear, soft, itch-free skin. If you would like to read more on her story, http://scratchymonster.blogspot.com/ So call it whatever you want, it's real alright and horrifically painful to go through - addiction, dependence - why doesn't the medical community, more doctors learn about it, discuss it, and find a name everyone is happy with. The problem is no one wants to listen and most doctors just turn their heads and say they have never heard of it - they show no interest in even learning about it.

    There is a doctor in Japan, Dr. Fukaya who has actually written a book on this condition, called 'Steroid Addiction 2010' - again the word, 'addiction' - 35 chapters of information on the condition that some still like to pretend doesn't exist. Some interesting information in there with some medical details/opinions that even differ from Dr. Rapaport's - there needs to be more funding to study this condition. I believe we are just at the forefront of it. Hopefully organizations like NEA will help with that. Thanks again for writing about ITSAN and topical steroid addiction.

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  19. There is a children's book that is coming out this month based on personal experience through the withdrawal process, including my daughter's experience with healing(I teamed up with a friend in the U.K. who is the author and blogs about her healing process at: http://topicalsteroidwithdrawal.blogspot.com/2013/04/special-post-taming-scratchy-monster.html .

    The book is called 'Taming the Scratchy Monster'. Hope it helps to raise more awareness on this REAL skin condition.I have a review of the book on my blog as well.
    http://scratchymonster.blogspot.com/

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  20. Did you know that your skin is the largest organ of your body? It is, in terms of both weight—between 6 and 9 pounds—and surface area—about 2 square yards. Your skin separates the inside of your body from the outside world. It protects you from bacteria and viruses, and regulates your body temperature.
    Conditions that irritate, clog, or inflame your skin can cause symptoms such as redness, swelling, burning, and itching. Allergies, irritants, your genetic makeup, and certain diseases and immune system problems can cause dermatitis, hives, and other skin conditions. Many skin problems, such as acne, also affect your appearance. Your skin can also develop several kinds of cancers. . Syeda

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  22. There are a couple of issues here:
    1) Something real exists.
    Whether it is called Topical Steroid Addiction or Steroid-induced Eczema or Steroid-induced Rosacea or Red Skin Syndrome or something else, it exists. ITSAN reports it (though using inflammatory language at times). Dermatologists and other physicians report it. Dr. Marvin Rapaport and others have documented it. And, most significantly, THOUSANDS OF PATIENTS HAVE EXPERIENCED IT.
    2) The established medical professionals and industries are aware of it but for a number of different reasons (scientific conservatism and skepticism, contradictory history of successful use of topical cortico-steroids (TCS) when used "appropriately," failure to recognize common practices of misuse/overuse of TCS, concerns about liabilities of admitting the problem, whatever; one could speculate forever) they have chosen to either not address the issue or have stalled on addressing the issue.
    3) The very latest American Academy of Dermatology guidelines on atopic dermatitis has chosen to not even acknowledge the issue and continues to use words like "caution regarding TCS potency" and "minimize the risk of adverse effects" and "patients should discuss concerns ... about treatment options... with their dermatologist" without acknowledging that dermatologists may be contributing to the TCS misuse/overuse phenomenon.
    4) After years of knowing that something exists, the National Eczema Association finally in December 2013 announced a Task Force to systematically review topical steroid addiction and draft a position statement. That work is not yet complete.
    5) The patient choice of going off of topical cortico-steroids cold turkey can be a brutally painful physical and emotional experience that continues for months and years and is debilitating, depressing, and not particularly well-supported by healthcare providers, insurers, and employers. The patient choice of not going off TCS cold turkey and continuing to suffer chronic painful "Atopic Dermatitis' (frequently misdiagnosed), and continue to be prescribed the use of TCS which may exacerbate and prolong their chronic suffering, is also not pleasant. Not very good options.

    I am hopeful that the National Eczema Association is serious about their roles of research, support and education and will step forward and take significant positive actions to improve the quality of life for the individuals and families suffering with this issue, whatever it's called.

    I'd say that our best opportunities at this point are to first educate ourselves and second to continue to vigorously complain and petition the healthcare providers, the professional organizations, the healthcare products manufacturers, and the regulatory agencies to act responsibly, do their job, and help solve this issue. Public pressure, media reporting, and even lawsuits are possibilities.
    I hope my comments are helpful and positive and would appreciate your feedback.

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