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 #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.

 

Feature #28: Kayla & Kleidy

Kayla.pngKayla Clarke 

Age: 26

Career: 3rd year resident of Naturopathic Medicine

When did you cease using topical steroids: Dec 19 2016

What type did you use: Betamethasone valerate 0.1% on and off for 18ish years

What is your favorite product for comfort? A big fuzzy blanket, a hot cup of tea, and cannabis salve

What is the hardest thing to deal with during this condition? Acceptance. For a long time I couldn’t accept what was happening to me. I thought (being in Naturopathic medicine), I would be able to find a quick fix. Not the case. I can support my body where it needs help, but in the end, I have to let it do its thing.

What is the first thing you will do when healed? Hike up a mountain and get all kinds of sweaty.


Kleidy Sevillakleidy sevilla

Age: 10

Career: Grade 4 student

When did you cease using topical steroids: June 2016

What type did you use: Prednisone, elidel, hydrocortisone in different strengths

What is your favorite product for comfort? Only product I can handle is vaseline, love icecream to keep me cold because I’m hot all the time. Also love to hear music to calm me down.

What is the hardest thing to deal with during this condition? Not being able to have a good night sleep. I’m always tired.

What is the first thing you will do when healed? I am going to wear a bathing suit and go to the swimming pool.

Interview #12: Torrin Bennett

torrinTorrin Bennett

Denver, CO

 1. When did you start using topical steroids and why?  
Torrin started at about 4 months for eczema. Small patches first seen on his upper lip and back. 

2. What was the name of the topical steroids? 
He was first prescribed hydrocortisone. 

3. Were you ever prescribed more potent steroids? 
Yes, over the next 8 years of his little life he was on and off of these steroids. Also, under occlusive wrappings (Wet Wrap Therapy for his last two years)
Hydrocortisone, Betamethasone Diapropionate .05%, Desonide .05%,Fluticasone Propionate .05% (external cream),Fluticasone Propionate 50mcg (nasal), Qvar 80mcg,Triamcinolone Acteonide .1%,Qvar 40mcg,Elidel 1%, Fluocinonide .05%, Fluticason Propionate .0005%, Mometasone Furoate .1% (cream), Mometasone Furorate .1% (ex ointment), Mometasone Furoate .1% (ex oint), Protopic .03%,Pulmicort 1mg (inhale), Qvar 40mcg.

4. How did you find out about RSS?
On September 11, 2014 I was researching hemp oil (anything to “cure” him) on Amazon. I was told to check out a few sites in that review and ITSAN.ORG was one of them. As soon as I read the signs and symptoms, I knew without a doubt Torrin had RSS. 

5. What made you feel you had RSS? 
He was full body red, extreme itchy, dry/flaky skin, water burned and stung him. 

6. Were you diagnosed by a doctor? Did you have a supportive doctor? 
Yes, his pediatrician listened and read the ITSAN material. Then to just educate her on RSS and/or if we needed any medicines, we confirmed the RSS diagnosis with Dr. Rapaport via telemedicine. 

7. What were your first symptoms?
Before we knew it was RSS, Torrin already showed signs of TSW ( “bad dandruff”, dry/flaky eyes and skin, redness, sensitivity to heat and water. When we stopped all steroids on 9/12/14 within a few days he became really red, itchy all over. His legs were swollen and could barely walk. The horrible “pins and needles”.

8. Is your family supportive? Friends?
Yes, our family was supportive. Friends were supportive but many just dwindled away and stopped asking to do things (because we couldn’t). We had no life for 2.5 years, basically. 

9. Have you ever been to a hospital for this? Why?
Yes,about 28 months in I took him into Urgent Care because his arm looked like eczema herpeticum. Thankfully it was not.
 
10. What was the hardest part of this condition? 
Everything! Watching your child itch himself till he was bleeding, the pain that followed, “pins and needles”, water like acid on his skin, watching his friends go to school, play sports, vacations, swim etc. We went from a very outgoing, athletic family to holed up inside their prison home for months and years. 
 
11. How long have you been in withdrawal?
Since September 12, 2014, 29 months. Torrin is still in withdrawal and has flares on his wrists, knees and feet but nothing like on or after steroids. He was able to bathe and swim after 1.5 years into withdrawal.

12. What do you use as comfort measures through this? 
At first baths and Aquaphor for 6 months into TSW. After that he chose moisturizer withdrawal so no bathes and very little Lemongrass Balm from Stephanie Home Apothecary and Honeypacificaco.com. Also, ice packs and fans.

13. Are you employed? Has this affected your job status? 
 I have always stayed home with my boys. I only worked part time but had to give that up to take care of him 24/7. Our family, unlike many others, were financially stable.

14. Has this affected Torrin’s education?
Yes! He missed all of 4th grade because he was bed ridden. I homeschooled him online last year and some of this year. He went back to school on 2/1/17. He was also held back a grade. 

15. Have you gone to therapy/wish to go to therapy because of this condition? 
No, we have not gone. Torrin seems to be doing fine and adjusting at the moment. Me, I’d like to go since I have been experiencing depression, anxiety and PTSD.

16. If there is one thing you could say to another sufferer, what would it be? 
Sometimes just allow yourself to just lay there and breathe if that’s all you can do at the moment. Sometimes that’s all I could do as I laid on my bathroom floor at 2am crying because I watched him go through so much pain. 

FAITH in God, HOPE that he will heal and the LOVE for my child is what got me through each day.


Thank you so very much for sharing your story, Torrin!

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

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This page should be utilized in every way to spread awareness.

Interview #11: Jen Hall

fullsizerenderJennifer Hall

Jacksonville, FL

“Nothing is wasted” I heard this from a T.D. Jakes sermon. It basically means that no matter what suffering you’re going through it won’t be wasted…it will be used in some way for your best benefit. It will make you a stronger, wiser, more resilient person who will be more appreciative for the little things in life. You can even use your pain and experience to help others. This saying held true & gave me faith through my healing process (and still does till this day), it kept me going and looking towards the future and how I can use my experience in some way.

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

10 months old. At around 7 months old my parents noticed that I had spots of a skin rash, I was really itchy and the doctors told them to use over the counter creams to keep the symptoms at bay. When they noticed it was getting worse, to the point of wrapping my arms in gauze to prevent me from scratching my skin to bleeding, they took me to a dermatologist and they prescribed me topical steroids.

2. What was the name of the topical steroid?

.025% kenalog (triamcinolone ) cream

3. Were you ever prescribed more potent steroids? 

Yes, higher potencies of triamcinolone (the main steroid I used for 26 years of TS use) as well as Desonide for my face, a mixture of steroids and lubriderm, and steroid shots of (I believe) triamcinolone in my hands and feet.

4. How did you find out about RSS?

I didn’t know there was a name for it until I found itsan.org. I had been withdrawing from the topical steroids for a little while already just because I was fed up of being sick and looking into natural remedies to heal my skin. I had found eczema-natural-healing.com and followed the woman, Donia’s story and how she stopped using the creams (and worked on cleansing and diet) and healed her skin. I took the same approach she did and I believe it was months later I found out about itsan.org and that there were doctors who had a name for it: RSS and TSA (topical steroid addiction) and were promoting cessation of steroids to heal the skin.

Following Donia’s approach inspired me to share my own story on my blog eczemaholistichealing.wordpress.com and help others just as she has! I receive many emails from all over the world from eczema warriors and I assist them with advice with diet, supplements and essential oils. I also truly believe that my overuse of topical steroids for 26 years led me to have cancer: stage 3 Hodgkin’s Lymphoma in 2008. This overuse of topical steroids has also lead me to have Keratoconus in both of my eyes (but worse in my right) which I will have to have treatment for soon to correct the misshaping of my cornea and poor vision.

5. What made you feel you had RSS?

All of the symptoms matched up to mine. I’m darker skinned but you can still see redness in my tone. I could never go a day without using some form of topical steroid on my skin, I was constantly itchy, if I would stop using the medication at any point in time my skin would revolt and flare up.

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

When I found out about taking the steps to naturally heal my eczema I knew that no doctor would understand so I just grinned and bared it by myself. I did have a dermatologist at Duke University Hospital that I had before I started TSW (and whom I’d get prescriptions from). When I scheduled an appointment to see her and tell her about what I was going to do as far as cessation of the medications and taking a holistic approach, she flat out told me “well there is nothing we can do for you here, I prescribe medication, so… sorry.” She had no alternative treatments for me, no information about diet or any info on how it truly is possible to be addicted to topical steroids. I even believe that she had said “there’s no cure for eczema“. I still plan on one day showing up and showing her how I got through this and how I’m much better off than I ever was on any cream she wanted to prescribe me! The only doctor who supported me was my oncologist at Duke University. I even showed him horrific photos of the beginning stages of my TSW and he was so impressed by how far I had come (6 months in) and he praised me for taking such control of my health and choosing this route of healing. He even offered info for a holistic doctors that he knew, but I couldn’t afford it.

7. What were your first symptoms?

Hot red skin, raised bumps, intense itch, hot and cold feverish symptoms then came the ooze… the dreaded ooze with huge cracks in my skin. My legs and especially my feet looked like I had a flesh eating disease because the skin was so raw, open, bloody and oozy. The pain and leg spasms were insane, like ants crawling UNDER the skin, and tingles like pins and needles. Showering gave me anxiety as the water stung and burned like crazy, I ended up going months without showering and just washing up not only because of the pain but also because getting my raw legs and feet wet just made it worse.

8. Is your family supportive? Friends?

Yes, very much so. I’m so thankful for my mother for physically taking care of me for so long and for both of my parents for helping me out financially. My parents both felt so terrible and guilty that because of taking me to the dermatologists to use these meds all of this time had got me in this situation.

Just like thousands of parents just wanting to see their child better, they did the best that they knew how and what they thought was right, to take me to the doctor. My mother and grandma would always pray with me and encourage me to keep my faith, let me know that God is always in control and this suffering won’t be in vain. My friends were super supportive and so kind throughout all of my health issues. They never made me feel like an outcast, always encouraged me and spoke healing into me. Still to this day they tell me how much they admire my strength of all that I’ve been through. Hearing those words from them always keep me going.

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

I have never gone to a hospital for TSW as I already knew doctors wouldn’t understand and just want to give me steroids, antibiotics and pain meds. I also couldn’t afford to pay out of pocket for a holistic doctor or naturopath. The one time I went to a clinic for a signed doctors note to excuse me from work, the doctor looked at me as if I was a fool and flat out said that what I was doing “clearly wasn’t working” and I needed to immediately get back on the steroids.

 

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

Symptomatically the ooze for sure… the smell of it is so awful, the icky sticky feeling it leaves on your skin and when it sticks to your clothes is aggravating, the way it crusts and hardens and itches is maddening. With all of that I know that the symptoms are good things, they show that the body is cleansing properly and getting all of that gross toxic metabolic waste out, by any means necessary. Emotionally and mentally would be holding on to the faith and hope that this will end someday, and digging deep to continue fighting. Just not giving up and giving in to suicidal thoughts that would plague my mind from time to time.

11. How long have you been in withdrawal? 

Since March 2012. I still cannot believe that I will be 5 years topical steroid free in March 2017! I can honestly say that I’m about 90%-95% healed, with just some irritation still from my knees down. My legs are just flaky and itchy at times and my feet are the same but with small areas that can get ever so slightly oozy. I’ve been able to comfortably wear socks and sneakers more recently, which is a huge milestone! Some days I have to just wear sandals (thank goodness I’m in Florida lol). I just have discolouration and wrinkling that is really left to repair, but no intense symptoms like the years before thank God!

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

Always reminding myself that “this is temporary” also that, “this pain and struggle will take a fraction of your life to endure and heal”. Lots of prayer and listening to uplifting sermons and gospel music. Reading positive, inspirational books. Crying instead of holding it all in. Crying on the phone to my mom and hearing her encouraging words. Listening to dance music, watching lots of movies and getting crafty. Constantly staying educated about detoxification & healing with food and natural remedies. Seeing my friends and laughing my booty off. And always, always having gratitude, even when I was in the deepest darkest hole I gave thanks to God because I knew the the only way out was to battle through it and that each passing day was one day more without topical steroids… one step closer to full healing. I always tell my readers to give thanks for the good and bad, the breakthroughs and setbacks, because the body doesn’t take overnight to heal because it didn’t take overnight to accumulate toxicity… it will take time and to always trust its natural ability to heal. Have gratitude for the pain because it shows that your body is properly cleansing and that you are becoming the healthiest version of yourself, free from the dependency of topical steroids!

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

I’m currently looking for work, but with my eczemaholistichealing.wordpress.com site I make a small income from the supplements and essential oils that I use and recommend (feel free to reach out for more info: eczema.holistic.healing@gmail.com). I was able to work retail for 1/2 a year, but a TSW flare brought me to quit my job as it affected my legs and feet, making it impossible to put on shoes and stand for any long length of time.

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

I have not, and I would’ve benefited from it for sure in the darkest of times. I found my therapy to be connecting with others through support groups as they knew the struggle first hand and we could all encourage one another, even if it was via the web. I found it amazing at how many people all over the world were suffering and feeling the exact same horrific symptoms as I was, especially when in the very early stages I felt like I was completely alone. It’s also wonderful to see so many doing much better and enjoying life to the fullest!

 

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

Don’t ever give up, you are a warrior and this pain and suffering you are feeling is temporary… it is literally a fraction of your life dedicated to repairing. It may seem like it’s dragging on forever but it WILL end, the body is so amazing at self healing! Always keep the faith and always have gratitude. Treat your body like the temple that it is with healing foods, lots of rest, exercise and loving thoughts. Focus on the future and the amazing things that you will do when you’re body is healthier, how you will live life fully, be more compassionate to others, share your story to encourage others and be of service in any way you can. Remember that this isn’t “happening to you” but it’s “happening FOR you” to be the healthiest version of you! Continuing the steroids for years and years would’ve only increased the toxicity in the body, and would’ve led to other health issues like myself with cancer and now Kerataconus. TSW is a huge battle to endure and embarking on it is the bravest thing you can do, commend yourself and keep on fighting!


Thank you so much, Jen, for this phenomenal interview!