anxiety – Page 2 – Preventable: Protecting Our Largest Organ

Interview #12: Torrin Bennett

Torrin 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!

Feature #24: Taylor & Blair

Taylor

Age: 26

Career: Homemaker

When did you cease using topical steroids: December 9, 2012

What type did you use: I’m unsure of all the names: topical steroid creams, Ellidel, and a round of herbal pills that contained steroids

What is your favorite product for comfort? Shea Butter

What was the hardest thing to deal with during this condition? Not being able to perform daily tasks because it was too painful to outstretch my arms or turn my head. Feeling self conscious in public or when meeting new people.

What was the first thing you did when healed? Wore short sleeves! Played outside in the heat with my two little boys.

Blair Dunkin-Salley

Age: 21

Career: Unemployed due to TSW soon to be a Licensed Esthetician

When did you cease using topical steroids: September 1, 2016

What type did you use: Locoid Lipo cream on and off since ’15, Fluonicide .01% for body for 8 months, 3 injections, and 1 round of Prednisone

What is your favorite product for comfort? Sticking my head in the freezer and Aloe Vera from a plant

What was the hardest thing to deal with during this condition? When I had a Staph infection on my face and arms for over 3 months and did not know it, and showers. Showers are torture.

What was the first thing you did when healed? Get a job at a Spa, wear short sleeved EVERYTHING, take long warm baths, and wear make up whenever I feel like it! Also I’m going to continue to be very out spoken about TSW in the Esthetics community, and hopefully develop a skin care line that specializes in the treatment of TSW, Eczema, Psoriasis, and Dermatitis related conditions of the skin; or maybe even opening my own spa with a TSW rehab package on the menu. Sky’s the limit!

More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

I saved the best for last. This hits home for so many sufferers.

This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

Feature #23: Katie & Ashley

Katie

Age: 21

Career: Unemployed, had to medically withdraw from school

When did you cease using topical steroids: July 2015

What type did you use: I used Triamcinolone 0.1% for 8 years, had a few rounds of oral steroids/shots of Kenalog

What is your favorite product for comfort? Lemongrass Balm and Frankincense

What is the hardest thing to deal with during this condition? The hardest part of TSW is the physical pain. There are days where I’m in so much pain that I can’t even think straight. The ooze is a close second though.

What is the first thing you will do when healed? First thing I’m doing is taking a trip somewhere fun and exciting. I’m not sure where yet, but I’m going to make sure to live it up and not to take life for granted. Oh, and I’m also gonna drink a margarita.

Ashley

Age: 29

Career: Attorney and Dance Teacher

When did you cease using topical steroids: November 24, 2015

What type did you use: I used many different types, but the last two I was on were triamcinolone and clobetasol

What is your favorite product for comfort? 3 things: 1. White t-shirts- they’re great to wear around the house because they are loose and breathable and I also use them to wrap my arms or neck during flare-ups; 2. Benadryl to help me sleep during the unbearable itchy nights; 3. Aquaphor

What is the hardest thing to deal with during this condition? Sleepless nights dealing with the bone deep itch & trying to maintain as much of a normal life as possible

What is the first thing you will do when healed? Workout and take a pain free shower

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:

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

Interview #11: Jen Hall

Jennifer 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!

Feature #22: Zuzana & Kara

Zuzana

Age: 32

Career: Work at a help desk, but now on Maternity Leave (but may have had to quit due to TSW if it wasn’t for Maternity Leave)

When did you cease using topical steroids: Sept. 17, 2016 (Previous tries — 10/15, 12/15, 3-6/16) Also ended Cyclo (an immunosuppressant) 300mg in January 2017

What type did you use: Dexa- and betamethasone ointments, Hydrocortisone and methylprednisolone shots, 1 round of oral steroids – Prednisone in 02/15

What is your favorite product for comfort? Vaseline + ichthamole and zinc oxide, tea tree oil for scalp, Probiotics, gluten and alcohol free diet. When I use the bath: Dead Sea salt, Epsom salt, ACV, tea tree oil, but now I just shortly shower

What is the hardest thing to deal with during this condition? Insomnia – the nights, hair loss, how itchy and oozy it is, being scratched to death and not being able to do anything about it, to care for my baby, to wear clothes – People thinking it us just a rash and telling me not to scratch – Being a burden to my family – Skin and smell is everywhere

What is the first thing you will do when healed? Take my daughter to the pool as she loves water and to swim, enjoy life again, live again and touch my dogs again.

Kara

Age: 38

Career: Attorney and COO

When did you cease using topical steroids: September 30, 2012

What type did you use: Cloderm

What was your favorite product for comfort? Dead sea salt baths, castor oil

What is the hardest thing to deal with during this condition? Disfigurement of my face and anxiety about seeing people, especially at work because I was a trial attorney at the time.

What was the first thing you did when you healed? I got dressed up, took off my glasses, and went out to a nice dinner at a winery with my boyfriend. A couple of months later I also cut off my hair, which I had been hiding behind during my recovery.

Feature #21: Danny & Fleur

Danny Brooks

Age: 24

Career: Was a sports staff member for RCCL

When did you cease using topical steroids: Oct 20th 2016

What type did you use: A large variety of tablets and creams over several years

What is your favorite product for comfort? Cetroben (heavy moisturizer)

What is the hardest thing to deal with during this condition? Around the 2 month mark I developed loads of tiny blisters all over my feet which burst when I walked making it incredibly painful to stand and walk until they eventually healed after about a week. (also happened on my hands)

What is the first thing you will do when healed? Reapply for my job as I loved my short time working on cruise ships!

Fleur Rose Blanche

Age: 10

Career: n/a

When did you cease using topical steroids: Nov. 13, 2016

What type did you use: Used Betnovate on and off since October 2015 for patches of eczema behind the knees and inside of elbows.

What is your favorite product for comfort? Calendula talc when skin won’t tolerate ointments. When it can, I like Egyptian Magic cream

What is the hardest thing to deal with during this condition? The flares with oozing, (they scare me), the itch is worst part now , also having to give up dancing and pulling out of a show in February. I miss my friends, school and gymnastics.

What is the first thing you will do when healed? Playing my instruments and dance lessons.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

#1

To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again.

“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well.

Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run.

Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt.

Donate Here

Feature #20: Rachel & Rachel

Rachel

Age: 24

Career: Unemployed due to TSW

When did you cease using topical steroids: November 2015

What type did you use: Triamcinolone and desonide cream daily for over 10 years. Prior to using prescription strength creams I used over the counter hydrocortisone per my doctors’s advice for the majority of my childhood.

What is your favorite product for comfort? Icepacks for inflamed skin and A&D for cracked lips.

What is the hardest thing to deal with during this condition? It’s impossible to choose just one. The endless itching and full-body aches are absolute hell. The loss of confidence, self worth and freedom are close seconds to the physical pain.

What is the first thing you will do when healed? Grow my hair out and swim in the ocean.

Rachel Fee

Age: 41

Career: Stay at home Mum

When did you cease using topical steroids: November 22, 2013

What type did you use: Hydrocortisone, betnovate, eumovate, fucibet

What is your favorite product for comfort? Epaderm cream, mainly Vaseline and Aveeno in the bath. Aloe vere gel for hives.

What is the hardest thing to deal with during this condition? For me the pain, bone deep itch, the burning and constant shedding was a nightmare. Not being able to wear clothes, cuddle my kids leave the house took its toll emotionally. The insomnia was also quite depressing as there was no escape from the pain.

What is the first thing you will do when healed? My healing has been gradual but I have enjoyed and cherished everything in my life especially doing the school run again, going on my son’s class school trip, watching their nativities again. Also just being able to get up and out of the house easier without a two hour bath. I’ve not been swimming yet but is on the list of things to do in 2017. Finally, because I was ill when I turned 40, I am organising a charity fund raising party for Itsan on May 20th 2017 to raise money and celebrate life!

Feature #19: Liz & Joana

Elizabeth King

Age: 40

Career: Unemployed due to TSW and fibromyalgia

When did you cease using topical steroids: June 13 2015

What type did you use: Honestly can’t remember them all.

What is your favorite product for comfort? A bath with sea salt, apple cider vinegar, and Aquafor. I also take LDN which helps.

What is the hardest thing to deal with during this condition? The pain (physical and emotional) and shedding.

What is the first thing you will do when healed? Swim in the ocean!

Joanna Hinz

Age: 31

Career: Unemployed due to TSW

When did you cease using topical steroids: May 2015

What type did you use: Fucicort, Elomet, Hydrocortizone, Elidel, Protopic, Elocom

What is your favorite product for comfort? Beeswax/Olive Oil, Lavender essential oil as a sleeping aid, apple cider vinegar

What is the hardest thing to deal with during this condition?

It is very difficult to narrow down only one part which was the hardest since the condition affects all parts of your life. I will just try to say what I feel are the top three hardest things:

* Being bedridden with your life being on hold and the disconnect from the outside world due to physical non-functionality, chronic pain and anxieties, while everyone around you is chasing their dreams and continues with normal day to day life

* Having no relief or break ever and months and months of sleepless and itchy nights, the suffering which goes with it during those hours of no sleep; while my body needed all the rest to re-gain strength and energy for my next day of trying to cope with responsibilities as a mother and wife, with no family support as I do not live in my home country.

* The way the condition affects a previously healthy mind in the worst ways possible and messes with your perception of the world around you, yourself, your loved ones, bringing the darkest and most negative thoughts you never knew existed before.

What is the first thing you will do when healed? I will love pursuing my career, enjoy the warmth of sun rays on my skin, go to the beach and swim with my son in the sea, go back to my passion of being physically active: working out, dancing and yoga.

Feature # 18: Alexandra & Brooklyn

Alexandra

Age: 32

Career: Unemployed due to TSW (I loved my job working with kids with autism)

When did you cease using topical steroids: July 18, 2014

What type did you use: I used for 30 years. So many I have lost track! All types, continuously upped the dose until I was in the ER constantly!

What is your favorite product for comfort? SALINE! I put it on a 4×4 disposable cloth and sponge bath myself or use it whenever my skin is burning, itching, or I am otherwise worried about infection or just want to clean my fingers without pain. I don’t go anywhere without it. It is my life line. Haven’t used soap in years, only SALINE.

What is the hardest thing to deal with during this condition? Hardest part is not being able to move or skin will crack. Very anxiety provoking. Also doctors upon doctors telling you you’re crazy.

What is the first thing you will do when healed? When I am healed I am going to live out my purpose of raising awareness and helping others heal from all sorts of physical, emotional, spiritual ailments.

Brooklyn Stafford

Age: 15

Career: Student

When did you cease using topical steroids: August 2015

What type did you use: Many different the last year mostly clotrimazole/betamethasone, Hydrocortisone(2.5%), Triamcinolone(0.1%), Epiceram( non steroid) clocortolone,(0.1%), prednisone 10mg, desonide 0.05%, UV therapy in 2014 for three months.

What is your favorite product for comfort? My favorite product to use during TSW was my moms home made Shea butter and Jojoba oil.

What is the hardest thing to deal with during this condition? The hardest part of TSW for me was going to sleep at night because I felt closed in and anxious. Also walking around was hard. My body would be in constant pain and I was dry, sticky oozy all at the same time. Sometimes the mental aspect was worse then the physical.

What was the first thing you did when you healed? One of first things my mom did for me when I was better was give me a make over at MAC. It was nice to wear make up.