IID Conference 2018, PART 2

It was quite the struggle getting up Friday morning after the swift burst of excitement from Universal. We were shuttled back into the event location around 11:30pm. By the time we got home and I was able to shower/get ready for bed, it was past 12am. So preparation for Friday’s long events seemed arduous at the start of the day.

Once we were back in the venue, it was time to work. Kelly was alert and ready with a smile, manning our booth, and I was keen on hitting every poster and mini-symposium I could before we needed a food break (and I didn’t want to eat my weight in candy). Luckily, at the large Mary Kay symposium, I was handed a lunch bag!

The symposium was on air pollution and the effects it has on the skin, especially in places that are high in pollution like Asia, the Middle East, and parts of Africa. A few things that are affected by air pollution are eczema, skin cancer, uticaria, acne vulgaris. There was a study presented that showed how pollution in Saudi Arabia was contributing to obesity and type 2 diabetes. And if there is chronic traffic pollution, facial letigens were increased. Researches were trying to find out if anti-oxidants (a specific mixture for the skin) could help suppress pollution-induced issues on the dermis. For example, DEP exposure induces skin darkening and melanin production. An enzyme called CYP1A1 is shown to reverse this damage.

When I linked back up with Kelly, she was super excited to have spoken with the NEA (The National Eczema Association) and felt confident that our voices were finally being heard. Just 5 years ago, TSW was deemed a myth on their website. Then a few years later, they had a task force put together to investigate this phenomenon because so many asked about it. Now, we have TSW being discussed on podcasts and being seen as one of the 3 leading reasons for worsening eczema. We also, while seated at our booth, were able to speak to two separate men (a researcher and a professor) who are in works with natural remedies for our atopic issues. They both agreed that topicals were dangerous to mess with long term.

Friday night was the big talk given by Amy Paller entitled, “How our Increasing Understanding of Pathogenesis is Translating into New and Emerging Therapies.” There was a lot of repetition from the early lecture on atopic dermatitis, however she delved into a few other therapies a bit more, particularly JAK inhibitors. This can help reduce inflammation. There was a study done (and I don’t believe steroids were allowed to be used) where 90% of the participants had mod-to-severe atopic dermatitis. It lasted 4 weeks, 2x a day using the JAK inhibitor or placebo, and they saw that it seemed to do slightly better than tacrolimus.

Two other newer treatments were 1) Topical Tapinarof. It resembles coal tar and can improve the skin barrier, along with lessening inflammation. It worked 50% of the time, fully clearing or almost clearing patients. The other treatment is 2) Commensal bacteria. This was touched upon in the other lecture, but Amy Paller mentioned a treatment called Roseomonas Mucosa. It is in open label study that is sprayed on the fossae and showed reduction of bad bacteria and improvement of the local SCORAD, along with reduced steroid use! (SCORAD is one way researchers and doctors measure the success of a drug or treatment).

One treatment that has already been out for a couple of years is Crisaborale, or Eucrisa. It is a non-steroidal PDE4 inhibitor. The trial for the drug lasted 48 weeks, and showed minimal detection in the blood. I do not remember the percentage for the effectiveness of the drug, but I do remember it being a bit low.

She, too, brought up antibiotic resistance issues, as well as the side effects AD can have on children. It showed that some may be more prone to having ADD — however, that may be happening because of the large amount of antihistamines being prescribed to patients. There are also many studies showing that 16% of patients showcase anxiety, and 14% have depression.

Overall, her talk was informative of new treatments, but it’s easy to tell that she is still very defensive of steroids and their cherished use in dermatology. She had shared a slide about allergies/contact dermatitis, and topical steroids were on the list of culprits. She would not mention their name and quickly scanned over the slide. I feel it is really hard for many dermatologists to acknowledge how unsafe topical steroids can be because it has been engrained in their mind that this is the one effective drug that works for patients — the end all, be all healer of eczema. I do appreciate how hard some of them are working though to find better and safer ways to deal with atopic dermatitis, long term. Change is coming, and I am glad she is talking about it!!

Instead of staying Friday night for the dinner after Paller’s lecture, we called it a night and cooked together at the apartment. She and I were exhausted, both of us still dealing with our individual TSW issues. We still didn’t get to bed until very late, myself strategizing about the next day and trying to decompress (I bought a new TENS stem machine at the conference from a booth next to ours and I was using it while cooking).

Saturday was a bit of an unpleasant surprise. The morning was fabulous. I came in earlier than Kelly to our booth and ended up speaking to two separate groups of medical students who were looking around. They had never heard of topical steroid addiction before, one even stating that she was learning about steroids at that moment and nothing like this had ever come up. Such a red flag knowing this isn’t even being touched upon in a class. However, to my and Kelly’s dismay, we had another run in with why we are encountering so many unpleasant and arrogant doctors.

Dr. Steven Feldman, a man who is supposed to be a professional dermatologist who teaches students, was ABSOLUTELY APPALLING. He gave a huge lecture on atopic dermatitis. I knew it was going to go downhill (and I mean, steep-no-brakes type of downhill) when he gave us an anecdote about this one patient who was getting worse and worse despite the amount of steroids he was using, so Dr. Feldman admitted him into the ER on a Friday, lathered him in triamcinolone, and by Monday he was better. He goes, “… there are 3 reason why someone who is extremely atopic, has tried everything, and then is sent to the ER where they cover them in triamcinolone and suddenly clear up … 1) poor compliance 2) poor compliance 3) poor compliance.” He reiterated this ALL throughout the lecture. It was always the patient’s fault if they weren’t getting better.

I can not even touch upon the nastiness of his scorn and condescension towards patients. What upset me most is when I looked him up and saw how his practice is unbelievably two-faced. On one website that showcases Dr. Feldman, this is what is stated below his biography: Screen Shot 2018-05-20 at 7.39.13 PM

“Patients should recognize that physicians do care (even if it doesn’t seem that way.” — I witnessed this man show a presentation on how biologics work, turn to the audience with a prideful smirk and say, “We should play that video for patients. They’d leave with more questions than answers.” The little laugh that came out after just cranked up my anger.

“Sticking with one doctor and building a strong, trusting relationship…” — Trusting? He gave MORE than one scenario where he said he’d manipulate or lie to a patient. One instance is him manipulating the patient into using a new drug. He said if a patient was concerned about trying a new drug, he’d tell them an anecdote about how he JUST saw a patient in his office, in THE VERY SAME CHAIR they were sitting in, and they were using the drug and are super happy! YEA! *super sarcastic* The story didn’t have to be true; it would be told to ensure that the patient would be more swayed into taking the drug.

The biggest lie, which was told with SUCH condescension (like nails on a chalkboard) was  his policy on “skirting around” the steroid question. He literally stated that he wouldn’t answer the question “is this a steroid?” when a patient asked. Instead, he would say (and this is WORD FOR WORD since he said it SO MANY TIMES throughout the lecture):

*in a soft-spoken, patronizing tone*

“This is an all natural, organic, anti-inflammatory designed to compliment your natural healing mechanisms to bring the immune system back into balance and harmony because I like to take the holistic approach to the management of patients with skin disease.” BUTTTTTTTT then he’d add on “gluten-free, made in a nut-free facility” if they dressed like a hippy and were from California. ANNNNDDD THENNN, he’d add on, “made in America” to anyone who was wearing a red hat that said make America great again.

How unprofessional is that?

And this is a man who is EDUCATING students! The whole lecture itself counted as a continuing education course!!! Everyone that needed a continuing ed credit could receive one at the end by filling out a survey!! Despicable.

How are we supposed to trust doctors when this is what is happening behind our backs? We weren’t allowed to film the lecture. Why? Because then THIS type of behavior would be exposed? This was my reaction afterwards:

It truly brought our fighting spirit out that afternoon. These are the kinds of doctors so many sufferers are up against in the office. When we are told to hold a conversation with our doctor, THIS is what most are met with — haughty, know-it-alls who blame the patient for everything! We are the reason for our suffering, not them. They are devoid of any responsibility. Not all dermatologists of course are in this man’s category, but it’s very apparent that people who share his views are scattered all around the United States.  It’s dangerous allowing him and others like him to be the leaders of ‘continuing’ education.

I needed to have a quick ‘harness-yourself’ moment before Kelly and I got ready to sit through 2.5 hours of atopic dermatitis poster discussions. We were at the end of our ropes and tired but we managed to get through them! We couldn’t miss out on those while we were there.

There were 11 poster presentations in total. I’ll give snippets of each (if there were things of importance to share.)

1. How most adults with AD have it mainly on their face and neck. So they were trying to target certain genes that may be linked to this. They found 3 specific ones to re-sequence that may help these types of patients.

2. Talked about OX40 inhibition (one of the biologics are targeting this) and how it may be helpful to those with T-cell driven AD. The clinical trial was very small, though. More trials still need to be done.

3. Talked a lot about IL-22 expression and trial being done. I have a feeling steroids were used during the trial, and they also said IL 22 by itself isn’t significant, but if it’s tied with other cytokines, it can play a role.

4. Spoke about JAK inhibitors — they reduce IL 2, 4, 6, 13 and 31. They had 419 participants in the study but many were dropped because they didn’t allow rescue medication, and they were transparent with the fact that once the person stopped the drug, they went back to baseline (meaning lack to their original state).

5. Spoke about PAR2 over expression and how it shows dysfunctional barrier, entry of allergens, which then activates immune response (mast cells go up), and then ends with deterioration of barrier.

6. This one was a bit overly scientific for me to fully follow. Spoke about Suprabasin (SBSN), an amino, and how nickel absorption is heightened in mice that are deficient in SBSN.

7. This speaker was talking about pH balance, but his accent made it difficult to follow, sadly.

8. Discovery of filaggrin loss of function variants in Hispanic and African American/Native American children with AD – High prevalence in central and south America for AD (which maybe can be because these places may not have regulation of steroids? — just my thinking). There are 3 known filaggrin models (10, 11, or 12 repeats). High loss of filaggrin in Asia and in some parts of Africa. The frequency of FLG loss of production is enriched in mod-to-severe AD observed in kids. Basically, she’s found 6 different discoveries in variants.

9. AD is associated with fragile homes in US children – Can worsen with anxiety and stress, and create financial burden. Higher odds of AD in children living with single adult families, non-biological fathers, unmarried mothers, and single mothers. Stress can trigger early childhood trauma and genetics. (There is a chicken or the egg scenario here though, depending on how in depth this study went — did the children have AD which caused a rift in the household ,thus playing a role in the couples splitting? Or did the couples splitting worsen the child’s AD due to stress?)

10. Another study on Staph aureus and how different good bacteria may help — such as S. hominis and S. epidermidis.

11. Another Dupilumab study and safety profile. They only seem to see a slightly higher prevalence of conjunctivitis in patients who use the drug. About 10% I believe in the trials had this side effect.

Once all the presentations were over, we went to the closing ceremony (which many didn’t care to attend), and it seems this is the last IID conference. They are now calling it the SIID (I believe) and it will be held in Tokyo in 2022. The next SID conference will be held in Chicago next May. I’m sure ITSAN will be attending, hoping to make even more connections.

As we were walking to our cars, Kelly asks, “Want to get Pho?” My mind was so cluttered and overwhelmed, I just stared blankly and couldn’t even recall what pho was. I’m glad she suggested it — delishhh. What the doctor ordered.

The conference was a wonderful experience (with a bit of sour thrown in). I think we still have a ways to go, but it is refreshing to see curious med students and other doctors who see what an issue long term use of steroids has become. There are still those steadfast, obstinate doctors who aren’t able to look past archaic ideals and views, but we will prevail one day for the betterment of treatment and patient care. #IID2018

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It was an honor so sit beside ITSAN. They have been doing such a stellar job being professional while advocating for Topical Steroid Withdrawal. It’s not an easy road they are on. Changing minds in a tactful and responsible way for the sake of saving others from pain and years of suffering is extremely commendable and worthy of a round of applause!

NYC Mount Sinai Integrative Medicine Conference

New York City is one of my favorite places, so when I was informed by Henry Erlich that this conference was being held in the Big Apple, there was no hesitation in buying a plane ticket.

The conference was this past weekend, May 13th-14th. I was only able to attend the primary day. However there was plenty of information to be absorbed. My main reason for going was to hear the prestigious and awe-inspiring Dr. Xiu-Min Li spill her knowledge on allergic disease, ASHMI, and her take on Red Skin Syndrome. She will be one of the doctors I humbly get to interview for the documentary this summer, and I am stoked! Such an amazing woman whose research I know will change the way we treat eczema in the next decade. I see a Nobel Prize in her future.

Dr. Li has a phenomenal opportunity while working at Mount Sinai, bringing together both Western and Eastern medicine in a clinical setting. No Western doctor will be able to deny her results and her rigorous efforts to show how wonderful Traditional Chinese Medicine can be (and is!) for our growing allergy and eczema problems.

Besides Dr. Li, there were a plethora of doctors participating, some even flying all the way from China. We had headphones and a translator present in order to understand everyone speaking.

At the bottom, I will be posting a video of Dr. Li’s talk and all that I was able to film. Sadly, I was told we couldn’t video anything so I wasn’t prepared. It was only very late the night before that I was told I was misinformed. I did my best filming with my heavy camera and old phone while trying to listen. It’s a bit shaky, so I apologize. It had been down pouring that day, which soaked my shoes, so most of the conference I was bare foot, attempting to sit on my feet in hopes of warming them up in that already frigid auditorium room.

But here are a few highlights from the conference:

1st Speaker: Susan Weissman

Her son, Eden, had horrific allergies, asthma, and skin problems. She found Western medicine was not helping their son improve. She is an avid promoter of Dr. Li’s work and is happy to say her son is finally able to enjoy life because of her protocol. She is the author of Feeding Eden, a memoir about raising Eden with all of his serious health problems. I think the most profound thing she mentioned was her question to Western medicine doctors: “How do we treat the entity of allergic disease?” Medicine seems to be extremely narrow-minded instead of looking at the body (or a condition) as a whole.

2nd Speaker: Dr. Xiu-Min Li

She gave a brief oration before her longer one at the end of the conference. The merit of her work is astounding and she emphasized how necessary it was to be able to show how TCM brings results that Western doctors can believe in and not have them be able to dispute them as “false” or “not supported.” All of her work has to be proven through science.

4th Speaker: Shi-Ming Jin, MS

*Apologies since I skip over a few speakers*  I loved how she spoke about how the integrative world is striving to be more innovative and adaptive to Western world medicine in hopes of showing how TCM is helpful and important in giving patients relief.

8th Speaker: Jing Li, PhD, FDA Botanical Review Team

Basically, there are FDA guidelines/guidance for using botanicals (herbs) in medicine. They are tested in clinical trials just the same as Western medicine, so they are treated equally. It can not be written off. A demonstration of quality control was given, and how they wish to minimize any chemical, biological and pharmacological variations to obtain consistent drug substances.

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10th Speaker: Ke Xing Sun

He gave a speech about how using TCM is about keeping harmony in health with our whole body working together as a unit. We are individual people with individual needs, something Western medicine does not always provide. We should be more patient-centered with medicine. He also advocated health in daily life, reiterating how prevention is key.

11th Speaker: Arya Neilson, PhD

*She was a stellar speaker* She deals with acupuncture and the benefits it can give to certain patients, even those with eczema. One of the most interesting things was how this type of treatment post-surgery can help with opiod sparing since we, in the US, take up the vast percentage of opiod use around the globe. Opiod abuse it sky high and having this available is quite a remarkable treatment. Acupuncture is now even included by Western doctors in some therapies! When it comes to allergies and eczema, there was a study done to show how dust mite IgE levels were down regulated after using acupuncture, and how itching was reduced in eczema patients. However, acupuncture is more of a rescue therapy for patients and herbs should come first in eczema treatment. (She is featured on the video)

12th Speaker: Scott Sicherer, MD

He spoke eloquently about his field in allergy/immunology in babies and what could be causing such an exponential climb in allergies these past few decades. No one is for certain, but he feels having exposure to the skin could be a factor. For some reason, there has been found to be peanut dust inside of homes, which is where skin contact could become an issue. If babies have eczema, they are at a higher risk for allergies. He would use oral immunotherapy to try and desensitize the allergy, hoping to eradicate or raise the threshold. Scott touched upon using biologics (omalizumab) for some cases for 20-22 weeks (it’s an anti-IgE), but he says it doesn’t mean it’s going to be any more effective (just perhaps speeds the process).

14th Speaker: Rachel Miller, MD

Rachel continued to speak on allergies and issues in infants and children, focusing a bit on pregnant woman. She showcased how if a pregnant woman is under stress, her child is more likely to have wheezing. She also explained how methylation and DNA does play a role in some of these areas and how Dr. Xui-Min Li’s protocol, ASHMI, has shown good results in pregnant mothers.

16th Speaker: Anna Nowak-Wegryzn, MD

She gave a very in-depth speech about allergies and infant treatment. When she mentioned starting oral tolerance as early as 1 year old, a question popped into my mind. If we can detect and start to treat allergies at that age, why is it that Western doctors are so quick to lather steroids on a baby, but claim they can not test for allergies until about 3 years old? That’s something that I feel should be addressed. When it comes to peanut allergies, she said she personally thinks using boiled peanuts instead of baked are safer to use for desensitization without losing efficacy.

** Funny side note** Dr. Xiu-Min Li came up and asked a question during Q&A. She asked it in Chinese, and the speaker answered back in Chinese. Everyone asked what was said so Dr. Li offered to translate. She started to do the translation, but didn’t realize she was still speaking in Chinese, so someone stopped her. She didn’t realize she wasn’t speaking English. We all had a laugh.

18th Speaker: Julie Wang, MD

 She spoke about a drug trial (See pics below)

20th Speaker: Dr. Kamal Srivastava, PhD

One of his best and to the point notes was that IgE is central to the pathology of allergic disease. Another subject he touched on was FAHF-2, which is another herbal formula much like Dr. Li’s ASHMI. Berberine, an herb, is the most potent at reducing IgE levels, and can even help lower glucose. However, it is very badly absorbed taken orally, so they are trying to make it more effective (perhaps, adding to a molecule).

22nd Speaker: Dr. Ying Song, MD

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23rd Speaker: Anne Maitland, MD, PhD

She studies Mast Cell Activation Disorders. Anne used the Great Wall of China as an analogy, how it’s not always effective for keeping the bad out. Mast cells can release different things, like histamine or tryptase, and just like a police call, you want to send the correct team out to help for the correct situation. She also touches on how when we figured out how to decrease certain bacterial-based diseases (like Measles), hypersensitivity disorders increased (like allergies). Naps, apparently, are something we need more of to help with stress (which I totally agree!).

24th Speaker: Julia Wisniewski, MD

She spoke about our skin barrier and how we shouldn’t use alkaline soap on baby skin. The best thing she mentioned however was that at the latest AAD meeting, she saw a slide that said steroids do, in fact, have the ability to cause allergic reactions in patients. Near the end, she spoke about Vit D and how it’s definitely important for our bodies.

The last two speakers were Tiffany Camp Watson, the mother who gave her testament about using Dr. Li’s protocol, and then Dr. Xiu-Min Li herself! They are both on the YouTube video speaking. Most of the video is of Dr. Li speaking. After 6:30 mins, it is all Dr. Li and her presentation.


I hope this was informative and I can’t wait to have all my equipment in to shoot these upcoming interviews! 2.5 weeks to go!

Interview #15: Keina Sabay

Keina SabayKeina Sabay

Manila, Philippines

1.When did you start using topical steroids? And why?

As far as I remember, I started using topical steroids in mid-2014. Unlike most people who started getting eczema as a kid, I only started to experience it when I was already 27 years old. It all started when I got insect bites from a trek that I did in December of 2013. The bites morphed into rashes that became eczema later on.

2.  What was the name of the topical steroid?

I can’t remember the exact kind, but it was a mixture of clobetasol and some other substance. The thing is, my dermatologist would just hand out the creams to me and tell me to apply them twice a day without discussing what they were and without warning that they should not be abused. I may have overused the steroids, as sometimes I would use them more than twice a day.

It was not until a few months later that I realized that these were actually steroids that I was putting on my skin. The same doctor also prescribed Iterax (I think it’s Aterax in the US) to help with the itching and sleeping problems.

3. Were you ever prescribed more potent steroids? 

Yes. I decided to stop steroids in November 2014 when I consulted a holistic doctor. But in March 2015, I experienced my first TSW flareup and I ended up going back to a dermatologist. My face was so red and swollen, so I was desperate to feel better. She prescribed a clobetasol cream plus Prednisone. It worked like magic, but my skin would just become worse later on.

4. How did you find out about RSS?

I was searching for natural remedies online and came across Briana’s story. Before I found out about RSS, my holistic doctor had already told me about the possibility of a healing crisis, where my skin would get worse before it starts to get better.

5. What made you feel you had RSS?

The eczema started from insect bites on my arms and legs, and that was where I’d get the rashes. But after stopping steroids, I started getting bumps on my face as well and after a while, my whole face had become one big rash. It was red, swollen, and weeping the whole time. Then my skin would crust over and I’ll have these flakes coming off.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

My dermatologists would diagnose it as eczema or dermatitis and just give me medication for my symptoms. My holistic doctor, however, made me go through blood tests and assessed that what I was experiencing was chronic inflammation that stemmed from imbalances in my hormones. This doctor was very supportive in helping me overcome my condition with lifestyle changes, proper nutrition, and supplements.

7. What were your first symptoms?

Patches of red rashes on my face, arms and legs.

8. Is your family supportive? Friends?

I am so lucky to have supportive friends and family. My mom took care of me when I was at my worst and couldn’t take care of myself. She prepared my food, washed my clothes and helped me research natural remedies for my condition.

My friends would always consider my food restrictions when we go out for dinner. I appreciate the simple gestures such as letting me pick the restaurant so I’m sure there was something I could eat.

9. Have you ever been to a hospital for this? Why?

Thankfully no. There was just that one time when I went to the ER because the insect bites morphed overnight.

10. What has been the hardest part of this condition?

I’d say the hardest part was putting my life on hold to focus on healing. It affected so many factors in my life such as my overall disposition, my finances, and my self-esteem. I was used to being independent, so not being able to take care of myself was a painful blow.

11. How long have you been in withdrawal? 

I first stopped steroids in November 2014, but I went back around March 2015 before stopping them for good. That’s a little over 2 years.

12. What do you use as comfort measures during this?

Epsom salt baths helped a lot to dry up open sores. I also used VCO (virgin coconut oil) to moisturize dry patches. I also cut my hair short so it wouldn’t irritate my face. Early last year, I discovered hiking and it played a big part in my healing. Being tired from the hike helped me sleep better and the following day my skin would always exhibit a marked improvement. I’ve been hiking at least twice a month since and I am almost completely healed now.

13. Are you employed? Has this affected your job status?

I was working in TV when this happened. I had to take a leave for 1 month, which extended to 5 months. I quit my job eventually.

14. Have you gone to therapy/wish to go to therapy because of this condition?

I didn’t go to therapy, but I did make major changes to my lifestyle.

15. If there is one thing you could say to another sufferer, what would it be?

Listen to your body. Whatever is happening to your skin is a manifestation of what is happening inside. My doctor also told me this, healing is marathon and not a sprint.


Thank you for such a wonderful interview, Keina!!!!!

Feature #32: Kirk

KIRKKirk Robertson

Age: 19

Career: Self employed Personal Trainer (currently on hiatus)

When did you cease using topical steroids: 29th of December 2016

What type did you use: Eumovate

What is your favorite product for comfort? Dead sea salts

What is the hardest thing to deal with during this condition? Not being able to build my business or build on my plan of becoming a professional natural bodybuilder

What is the first thing you will do when healed? Train with my girlfriend and go out for a meal with my family.  Followed by an overdue night out!

Feature #31: Magda & Elspeth

Magda RoszMagda Lima

Age: 23

Career: Property Manager

When did you cease using topical steroids: April 2016

What type did you use: I’ve only used steroids topically: Hydrocortisone- eyelids, neck , Betamethasone valerate and many more but I can’t remember them all. Immunosuppressants : elidel, protopic

What is your favorite product for comfort? Dead sea salt + Himalayan salt baths, castor oil, calamine lotion- when oozing, tubular bandages

What is the hardest thing to deal with during this condition? The hardest part for me was first 9 months when I was red from head to toe, horrendously itchy and I could not sleep! I am now 12 months in and still having good and bad days, the worst areas now are face, neck and hands.

What is the first thing you will do when healed? Put make up on! Enjoy my life again!


Elspeth JellisonElspeth

Age: 35

Career: Speech Language Pathology Grad Student (Finally graduating May 2017 – Woo-hoo!)

When did you cease using topical steroids: July 7, 2016

What type did you use: OTC hydrocortisone, Dermasmoothe, Clobetasol .05%. Also used Elidel and had 3 or 4 short bursts of oral steroids. This was all during a year and a half period.

What is your favorite product for comfort? Safe Soda (Pharmaceutical grade sodium bicarbonate). I started using this around 8 months TSW and it really changed my life. Funny Youtube videos also saved my sanity during my toughest periods of TSW.

What was the hardest thing to deal with during this condition? The hardest part of TSW was the feeling that I wasn’t even me anymore. I was in so much pain and so sad all the time that living felt like a chore. I also hated how I felt I couldn’t be there for my husband and son the way I wanted to be.

What is the first thing you will do when healed? My skin has already improved enough to accomplish my first goal which is to enjoy a vacation with my family. This weekend I’m going to go get a dog, which I’ve wanted to do for ages but haven’t felt well enough to for a long time. I still have some left to go on my healing but I’m grateful to be able to enjoy life again.

 

Interview #14: Danae Kirtley

DanaeDanae Kirtley

Eureka, California

1.When did you start using topical steroids? And why?

I started using topical steroids by recommendation from my family practitioner in an effort to treat my childhood eczema, starting at about age 10.

2.  What was the name of the topical steroid?

To begin with, my parents and I were advised to use over the counter Hydrocortisone cream (.5-1%) liberally, to any and all rashy areas of skin. Was also advised to apply like lotion after every bath or shower as a “prevention method” even if my skin was not affected by eczema.

3. Were you ever prescribed more potent steroids? 

Yes. After a few years of using Hydrocortisone cream and my problem areas had spread and become more vigilant; I was given a trial tube measuring a few ounces of Elidel. After that didn’t work and burned my skin, I was prescribed Triamcinalone ointment, which I rarely used because I hated the texture, greasines, and how much it burned my skin.

4. How did you find out about RSS?

I found out about RSS after researching online desperately for the cause of my worsening symptoms. After using Hydrocortisone cream twice daily to my face, and 3-4 times a week on my entire body like lotion for 10 years- My body had seemingly given up. I couldn’t suffer anymore, and I needed answers. I found ITSAN and there began my diligent research.

5. What made you feel you had RSS?

What had made me feel like I had RSS was that once the information was before me- I just knew. I had never thought that anyone else had suffered the same symptoms and had suffered so uniquely as I had. I read the many testimonials, medical documents, blogs, vlogs and more from people all over the world with the same story I have.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

I was not diagnosed by a doctor, however- my General Practitioner was very supportive. She was just as baffled as I was at my chronic, increasingly debilitating symptoms. She agreed that the amount of exposure and absorption of steroids I had was alarming. We came up with a plan to taper down my usage and to meet more regularly so that she could monitor my symptoms and keep track of my progress. All the while, she had ordered many different blood tests to rule out any other autoimmune diseases, disorders, deficits in nutrition and more. Nothing of relevance to explain my symptoms came up with as many tests as we did.

7. What were your first symptoms?

My first symptoms of Eczema began as early as preschool years, between ages of 5-6 years old. My inner elbows and back of my knees were always dry, sensitive and itchy. After the first year of using Topical Steroids, my rashes had spread all over my arms, legs, and had begun manifesting on my face, neck and chest. My body would erupt into bright red, inflamed skin, that would burn like I had never experienced before and itch deep within my subdermis within one day of not using Topical Steroids. It had become a begrudging truth that my body NEEDED the application of Steroids daily, and for years, to maintain any semblance of normality. All the while, my health declining. What initially caused me to research the symptoms of long-term use of Steroids, was my rapid decrease in weight, my eyesight, worsening skin condition, and hairloss.

8. Is your family supportive? Friends?

For the most part- Yes. Once I had done about 3 months of personal research, and had already been to a multitude of appointments with my GP, and Ophthalmologist, I created a plan to introduce my and my doctor’s findings with closest family and friends. I asked for their support and provided opportunity to allow them to ask their own questions, express their concern and understanding. Several of them completely agreed that withdrawing from Topical Steroids would be in my best interest long-term. Many of them came to my aide in the best ways they could, be it care-packages of sterile gauze, feeding and helping me with personal care, or stopping by to spend time with me while I lay in bed for those many many months of disability.

9. Have you ever been to a hospital for this? Why?

I had been to the hospital for blood-tests, I had considered going to the ER multiple times when my symptoms were so severe that I was in and out of consciousness because of the extreme amount of pain I was in. Thankfully I was under the care of family and my Fiancee, who all did their best to comfort me and do everything they could to surround me with love and support. The possibility of being administered Steroids in addition to any much needed pain management medication had I gone to the ER- was too much of a gamble against my progress.

10. What has been the hardest part of this condition?

Besides the incomprehensible amount of pain that I endured(and endure still from time to time), is the decline of my mental health. Being suddenly thrust into Disability and not having a definite time-frame for healing and success is taxing to say the least. I was often alone, with my own thoughts, while being unable to move and bedridden. I became unable to look at my own reflection as the person I had always been and seen looking back at me was gone. I didn’t recognize myself, and being unable to function in a physical capacity only fed into a Dissociation type state even further. I was in a very deep Depression along with weeks of insomnia. To this day, my anxiety and difficulty relating to others in social activities still is of great difficulty for me. I continue to challenge myself in positive ways. However it feels as though I am forever changed, mentally, because of this illness.

11. How long have you been in withdrawal? 

I started tapering my usage of Steroids under my General Practitioner’s guidance in the very beginning of November 2014. I started my full withdrawal after my birthday in December 2015. On the day that I am writing this, it has been 817 days since my last application or administration of Steroids. I am not yet ‘healed’, however, I have made a tremendous amount of progress. I went from being completely unable to perform the smallest tasks for myself, like sitting up in bed. Brushing my teeth, or walking at times… to now being able to walk, work part-time, I do daily house chores, and even present as a normal person from day to day. I have bad days, but they don’t knock me down nearly as bad as they used to.

12. What do you use as comfort measures during this?

I listen to lots of music, I play music myself, I have been catching up on all the shows, and movies I have missed throughout the years. I drink tea and have many contemplative moments, writing, and lots of snuggles. Sometimes I am inconsolable, but the truth in those moments are that they are always temporary- as my best friend and beloved fiancee has said since day one of TSW, “Maybe Tomorrow…” Which to us, means: Tomorrow may be a better day, it may provide better or different opportunities to be fulfilled, or more able. It is a phrase that instills Hope, even when things feel or seem very dark, it will always get better.

13. Are you employed? Has this affected your job status?

I have now been employed after a 2 year absence in the workforce, for 5 months! This means a lot to me as I have always worked hard and enjoyed being employed. Being affected by TSW still provides interesting challenges at work for me. Thankfully my Manager and coworkers are all very understanding and are more than willing to make exceptions or take on tasks in order to keep me comfortable. I am very thankful and humbled by my ability to work with such supportive people. Sometimes I have to sit, while I am on shift, as I get very dizzy and disoriented after standing for hours. Sometimes I have to take an additional break to relax, or coworkers have had to come in as a replacement for my missed shift because of a ‘Flare-up’ that inhibits my ability to perform my duties. I am pleased to share that my strength and physical duress has improved over the past 5 months and I only hope to continue getting better.

14. Have you gone to therapy/wish to go to therapy because of this condition?

Yes, I would very much like to go to Therapy because of TSW. I have all of the classic markers of PTSD from this condition, and because of the extreme amount of mental stress I endured. I have had a resurgence of mental symptoms and new ones (that I do not wish to share), that do get in the way of my daily activities because of TSW. The amount of trauma and pain that we all go through with this condition is absolutely extraordinary and severe.

15. If there is one thing you could say to another sufferer, what would it be?

IT GETS BETTER. It may feel like this pain will last forever, but it does not. I remember that hopeless feeling very very well- but we do get better and I am proof of that.


Thank you for such a terrific interview, Danae!!!!!

Feature #30: Meghan & Kristen

Meghan PicklesMeaghan Pickles

Age: 13

Career: Student

When did you cease using topical steroids: Feb 2016

What type did you use: Hydrocortisone 1%, Betamethasone, Avantan fatty ointment

What is your favorite product for comfort?  Epiderm, Tubifast Wet Wraps, safe soda bicarb of the bath and the body, Queen Bee Balm (Bee Skin Recovery)

What is the hardest thing to deal with during this condition? Enduring the worst pain of my life, oozing skin, shivering and feeling freezing cold even in hot temperatures, the skin snowing and rejuvenating every three days to raw skin, the intense burning, constant dilated capillaries that leave the familiar red mask of TSW, the lack of support from specialists and then being threatened we would be reported to child services for refusing steroids! Losing most of my friends.

What was the first thing you did when healed? I went to a BBQ for 2 hours, I was free, I was out of the house without wet wraps, I went shopping and tried on new clothes instead of staring on in pain watching my friends do what I couldn’t do. I lost nearly a year out of school, but now I’m healed and it’s all over.


Kristen BKristen B

Age: 21

Career: ECE/ Nanny

When did you cease using topical steroids: Feb 19th, 2017

What type did you use: Hydrocortisone, Ellidel, Protopic

What is your favorite product for comfort?  Ice Packs, Aquaphor, burning my arms when itchy

What is the hardest thing to deal with during this condition? Having to re-home some of my pets, the draining of my self-esteem, having to go to bed with multiple ice packs and a fan since I can’t fall asleep otherwise, and the financial hardship having to spend tons on remedies.

What is the first thing you will do when healed? I plan on working out, eating whatever I want and not having to worry about a flare, go out with my friends, play with all my animals again that are making me flare up, and just enjoy life in general again.