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!

IID Conference 2018, PART 1

This past week, Kelly Barta and I attended the International Investigative Dermatology Conference in Orlando, Florida. Kelly is the new President of ITSAN, the International Topical Steroid Addiction Network. We had met on two other separate occasions, so I trusted the week would be filled with both fun and advocacy.

On Wednesday night, we entered the Rosen Creek Hotel dressed in our best and hoping to mingle. To say the conference was packed is an understatement. Doctors and researchers from around the world were stuffed into the open buffet and bartended area, chatting and greeting old friends. We figured out there must be around 3,000 people present. Our mingling strategy was a no-go since there was not much opportunity to interject into already matured conversations between colleagues. We however caught up amongst ourselves and shared our thoughts of what we expected, what he hoped would come to pass, and how to best utilize our time at the conference. Kelly had already set up a fabulous booth in the poster presentation room and all we had to do now was make an impression.

Thursday was our first long day of the ‘marathon’. With Kelly being such a warm and intelligent conversationalist, I would leave her to man the booth while I attended some of the smaller poster sessions and mini symposiums. I was interested to see what else was happening in the field of dermatology surrounding the skin (that perhaps could intersect with our advocacy). There were LITERALLY over 1500 posters being showcased, all with different research topics. Quite overwhelming for an onlooker who didn’t understand every facet of research or jargon being used. The only place I felt confident was at the Atopic Dermatitis presentations.

That night, before the IID shuttled us off to The Wizarding World of Harry Potter, we had a large lecture on Pathoimmunology and Management of Atopic Dermatitis. There were 4 different speakers: Emma Guuttman-Yassky, Jonathan Silverberg, Eric Simpson, and Amy Paller. They are some bigger names in the AD community. Many topics were discussed during this blocked period, most of which were echoed and further looked at in other sessions. One is the two main categorized causes of AD: The INSIDE-OUT, and the OUTSIDE-IN. The former comes from a Type 2 response in the body (like allegories) and all the different IL pathways. IL stands for interleukin, which are certain glycoproteins responsible for immune response. There are many ILs that seem to play a role in AD and other autoimmune issues, such as psoriasis. The latter cause stems from our epithelial barrier and innate immunity– things like filaggrin, which are what help seal out allergens and irritants from entering our bodies.

One huge element I took away from the lecture was “AD (atopic dermatitis) IS REVERSIBLE AND IMMUNE DRIVEN”. That word, reversible, is a word filled with hope. So many patients have heard doctors tell them that they will be on steroids for the rest of their life because eczema is incurable. But, if we can find a way to reverse the damage, it will be a day of joy. I truly hope in the next decade we find out how little we will ever need to prescribe steroids since we will have found safer and more effective drugs that target the causes of our symptoms, not just the symptoms themselves.

At one point, when they were discussing statistics (adults with A.D.: 7%/Children: 15-20%), they were not sure why A.D. was becoming more persistent into adulthood. All I could think in my head was: steroids. If patients are being treated constantly with steroids, some are sadly going to be in the steroid-induced eczema column. They also gave statistics on our lack of sleep and teetering concentration throughout our work days. 90% of sufferers said they experience sleep loss 1 night a week. 50% said they experience sleep loss 5 nights a week! What a large number!

The hottest topic however was new treatments being studied or already in trial for helping relieve patients with atopic dermatitis. The one we already have available in the United States is Dupixent (Dupilumab), which is an injectable treatment that targets IL 4 and IL 13, two culprits in AD inflammation. They are seeing it help around 50% of patients (noticeable to massive improvement), and studies that even show improvement in filaggrin production.

The drugs that are in phase trials going on are the following
(name of drug: the IL it targets):
Tralokinumab: IL 13
Lebrikinumab: IL 13
Mepolizumab: IL 5
Nemolizumab: IL 31RA receptor
ANBO2O: IL 33
Tezepelumab: TSLP
GBR830: OX40.

So many!! And these are just the monoclonals (or also known as biologics). You may be wondering why we have so many IL targets that differ, and it’s because not only can many play a role, but different ethnicities have issues with different ILs. One drug may work wonders for one person, but it may not help another very much. Doctors and researchers are doing their best to tackle this puzzle.

Something I did not enjoy hearing about with these trials however is that many allowed steroid use. So, when you see the number 68% in the placebo group, it’s not because it was just a psychological improvement, but because they were using steroids when needed. How are we supposed to know the efficacy of a drug by itself if steroids are also being used in tandem? Not all trials but too many to count are allowing this. Nevertheless, it still seems to be helping some individuals who are now off of steroids because of it. That is a plus.

Another stellar branch they are trying to utilize is bacteria. It has become apparent that Staph aureus (Staph au.) plays a part in irritating atopic patients. Many doctors present spoke about the need to keep antibiotic-resistence at bay, so this new study (hopefully going to be conducted within this year) is going to be using good bacteria to try and combat the bad bacteria. Different strains of bacteria are able to fight against Staph au. and a couple in particular will be in the trial (I am not sure exactly the one that will be in the trial, but I believe it will be Staph hominis or Staph epidermidis). Exciting times!

At the end of the lecture, Eric Simpson allowed us to partake in an electric quiz. He gave us a scenario and then asked us (mind you us meaning a room mostly consisting of AD dermatologists or researchers) to answer a few questions surrounding what treatment route we would take for the patient. So, this patient in particular had used plenty of steroids, the scenario even including that he had taken oral rounds of steroids. Now, this patient is coming to see you — Your first step at the new office would be?

a. Repeat course of oral steroids
b.Consider patch testing
c. Start ustekinum
d. Biopsy

The majority of us (including myself) put B — patch testing. However, 16% answered they would do ANOTHER round of orals. Right there, in that room of maybe 100 people, that many jumped straight to the easy go-to that was obviously NOT working. It blew my mind since the % for answer “a” should have been 0%.

Then, he gave us a new scenario (I can’t remember all the criteria), but his first question was “You think the patient has AD. Your first line treatment for this condition would be”: and 58% stated topical steroids. It is still very much the go to, first line treatment. I was sad to see this, but this is what is taught. And it doesn’t make me sad because I think steroids are evil — that’s not my thought process. It makes me sad because when they are given steroids, it is most likely going to be for a much longer prescription than advised by the FDA guidelines (which is around 2-4 weeks of use). However, I was pleasantly surprised/perturbed by the next question: “He fails aggressive topical therapy, what is your next form of treatment?” Great, right! He is saying if the patient fails the first prescription, you move onto the second and not keep the patient on steroids forever! But, vaguely, what does “aggressive” therapy imply? Quick but super potent dose? Excessive use of steroids at different potencies? That part did catch me off guard. And his answer for the question was Phototherapy. I wish that would be considered as first line treatment and not steroids — but it can be impossible for a patient to do since it requires coming in 2-3 times a week for a short burst of UV treatment. Inconvenience, cost, and slower progression in skin repair is NOT what we want (or can sometimes even have as an option). We want the RIGHT NOW, which is steroids. They are quite the temptation. But that was the ending of the conference day, educational wise.

During the day on Thursday, while I was out scouring the posters and soaking up as much lecture information as possible, Kelly did a stellar job networking! I am in awe of her skills. She has a knack for starting conversation and speaking fluently with any stranger. She was able to talk with a few different doctors who were aware that steroids were not the chronic bandaid patients should be dawning, and thankfully she had a wonderful talk with two women from the Psoriasis group! Plus, a plethora of individuals came by the table checking out ITSAN case studies printed out in a binder, ITSAN brochures, and even USB drives with the case studies loaded on them. I’d say it was a pretty successful Thursday! Plus… Universal Studios!

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(stay tuned for Friday and Saturday)

Also, I am not on ITSAN’s board and do not speak on their behalf. We are both advocating for the same cause and I am honored to be working beside them in raising awareness. 

Feature #33: Mel & Heather

MEL LYNCHMel Lynch

Age: 37

Career: Teacher

When did you cease using topical steroids: October 2013

What type did you use: I used pretty much every sort for over 30 years. Including eumovate, betnovate, fucibet, dermavate, betnovate scalp treatment and lots of courses of oral steroids too.

What was your favorite product for comfort? When my skin was at its worst, I would spend most of my life in the bath. I used Dead Sea salts in my bath and always moisturized. I also used zinc cream to ease redness and swelling. I also found comfort using bandages especially if my skin was oozing.

What was the hardest thing to deal with during this condition? At times the pain was unbearable and I hated being unable to move and being stuck in my bed or the bath all day. But the very worst thing was not being able to hold or cuddle my daughters. My youngest was a month old when I started tsw so I spent the first 2 years of her life being ill on and off. Very depressing but she doesn’t remember! My eldest was very good when I was ill. She is 8 now and doesn’t like to talk about it or see pics of me when I was poorly. It definitely had an impact on her.

What is the first thing you will do when healed? I consider myself close to being healed, the thing we did first was go on a family holiday. I do enjoy being able to take my girls swimming … that was something I couldn’t even do before tsw as my skin would never be clear. Now it’s great to be able to show off my legs!


Heather LeeHeather Lee

Age: 26

Career: Currently in my last year of nursing school

When did you cease using topical steroids: October 2015

What type did you use: Desonide, hydrocortisone, triamcinolone, as well as dexamethasone injections and tons of oral prednisone .

What is your favorite product for comfort? Aquaphor and Zinc Paste

What is the hardest thing to deal with during this condition? I started nursing school at the same time I started TSW, it’s hard trying to take care of patients and having them ask what’s wrong with you. At times I was in the hospital taking care of others when I felt I should be in there myself.

What is the first thing you will do when healed? Travel! I already travel a lot but it’s hard to fully enjoy it with TSW. My dream is to go to Iceland and not be worried about my skin cracking open

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!!!!!