Feature #19: Liz & Joana

liz-kingElizabeth 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 Hinzjoanna-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

alex-lgAlexandra

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 Staffordamanda-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.

Feature #17: Mireya & Sara

mireya-pinedaMireya P.

Age: 25

Career: AR Retention Specialist

When did you cease using topical steroids: April 15th 2016

What type did you use: Triamcinolone ointment

What is your favorite product for comfort? I love the Aquaphor ointment, Shikai Tea tree shampoo and conditioner (cured my scalp), and garlic. I used to take baths with Dead Sea salt or Epsom salt, ACV, tea tree shampoo and garlic (gave me so much relief and prevented infections).

What is the hardest thing to deal with during this condition? The hardest part of TSW is how unpredictable it is and not knowing if or when it will be over. Missing time with my loved ones and not being able to sleep!

What is the first thing you will do when healed? Spend the day at the beach with my loved ones and eat my favorite food.


Sara Evanssara-evans

Age: 26

Career: I co-own a Kombucha & Dairy-Free Ice Cream shop with my partner, but haven’t worked since August due to TSW.

When did you cease using topical steroids: August 20 2016

What type did you use: Triamcinolone 0.5%

What is your favorite product for comfort? CBD oil & Hanna Andersson pajamas

What is the hardest thing to deal with during this condition? The hardest part of this journey is the time I have lost. The itch disappears, pain fades, skin heals, but time is something you can never get back.

What is the first thing you will do when healed? The first thing I want to do once I am healed is lay in the sun with my pets.

Feature #16: Paula & Jane

paula-pPaula Perris

Age: 30

Career: Mother, Wife, Health Care Assistant up until TSW. I was in collage studying social care.

When did you cease using topical steroids: 15th June 2016

What type did you use:  Methotrexate, UV light theraphy (hand PUVA) prednisolone, Dermovate, Bethnovate, immuovate, fucibet, protopic, Elcon…

What is your favorite product for comfort? I always go back to silcock’s base but also use coconut oil, dipolbase, and cotton gloves.

What is the hardest thing to deal with during this condition? Not been able to touch my children without being in pain and the long sleeplessness nights.

What is the first thing you will do when healed? Take my children to the beach, hold their hands, LIVE and of course raise awareness!!


Jane Cavallajane-cavalla

Age: 43

Career: Art educator

When did you cease using topical steroids: March 2013

What type did you use: Mostly Betnovate RD, but have had orals and stronger ointments throughout my life.  Injections as a baby!

What is your favorite product for comfort? My own homemade shea butter and jojoba butter balm

What is the hardest thing to deal with during this condition? Itching, itching deep bone itching! Severe dryness/elephant skin, lack of sleep, no life outside of TSW, impact on family  and depression

What is the first thing you will do when healed? I am starting to have days of healing now, on good days – I can wear black!  Wear make-up, go out with friends and enjoy my life again, be more present as a mother, and consider the possibility of meeting someone.

Feature #15: Tanya Kong

tanyaTanya Kong

Age: 33

Career: Lawyer

When did you cease using topical steroids: I’m not sure exactly, it’s been over a year now.  I stopped after searching ‘eczema’ on the internet and Instagram and discovered the hashtag #tsw. I remember having one last prescription of steroids in my cupboard at that time, and telling myself once that supply ran out… I wouldn’t go back to the doctor.

What type did you use: Can’t say I paid attention to the names, but mostly a mild to medium strength brand. Often would just pick up the over the counter 0.5% hydrocortisone, but the last prescription I remember was from my family doctor –  500ml lotion bottles of 1% hydrocortisone with 2 refills.

What is your favorite product for comfort? It’s varied over the year or so. I hate using anything that isn’t natural. Right now coconut oil is working really well, which is weird as before it would make me extremely itchy. My skin seems to be taking it much better. If I put anything else on it – I get unbearably itchy, including any creams touted to be for itchy or dry skin with no fragrances etc. But of course, above and before anything else, this whole process has inspired me to learn SO much more about the body, how it works and how I can help my body with supplements, good food and nutrition. I find a big part of this struggle is the mental anguish, the insecurities, depression, anxiety, lack of motivation, loss of hope…Going to topical therapies is one method to quell the pain, but the biggest difference has been eating the right foods to control my moods and keep my energy up. I make a smoothie every morning and throughout the day supplement with daily doses of goat’s milk kefir (prebiotic), DHA and fish oils (skin texture, brain and nerve function), hemp seed oil as a source of omega 3 and vitamin E (skin, brain and nerve) ashawaghanda herb (stress and anxiety), ionic magnesium citrate (waste removal, relaxation, sleeping and quelling inflammation), maca herb (better mood, stress relief, sex drive), blueberries (skin and brain function), raw cocao (source of magnesium and zinc – helping heal the skin), zinc citrate (heals the skin), turmeric (calms inflammation, improves mood), chlorella (remove toxic metals from the blood), raw honey (can be mixed with anything in warm water – improves bioavailability of herbs and supplements– i.e. helps body assimilate and process these supplements so they work better!)

What is the hardest thing to deal with during this condition? I’m a lot better than I was. It’s been an incredibly challenging year. It’s difficult to relay to others the pain, and garner the understanding and empathy for someone who itches constantly, shuns their new reflection, and feels shame and embarrassment in public. The pain, distraction, stress, and anxiety can be unbearable. I’m a private person, and I don’t like to burden people with my personal problems, and I do believe we all have some kind of struggle to endure – whatever the form. But I think what makes this most difficult is explaining the complexity of my pain. Most nights have been a push, a call to god to be strong and power-through the unbearable itch, the soreness and missing out on life and being normal. Any woman wants to feel pretty, sexy and powerful in their own skin. Skin is a reflection of health, vitality, and sensuality. It communicates feelings and emotions through touch. To lose confidence, and self-worth; to see my bright light fade and watch myself and my face, neck, chest and arms deteriorate over the last year and not have the strength, energy or stamina to see the people I love and adore, then watch friendships I turned away from for fear of appearing frail or being viewed as ‘unpretty’ fade over time has been hard. BUT, I refuse to look at this as a loss! I’ve learned so much about my body and I’ve discovered the most real and authentic sources of love in my life. I thank it. Sharing this story means one step towards our collective evolution in accepting that the body is an intelligent biological system that knows how to heal itself.  Prescription drugs that suppress symptoms have the potential to wreak havoc on the body, more havoc than we ever imagined and often much worse than the original ailment. We MUST give credit to and appreciate the merciful intelligence ingrained and innate in our cells. Our body can heal itself, if we appreciate it for everything that it is, and allow it!

What is the first thing you will do when healed? I’m almost healed now…and slowly but surely, I’m feeling more and more comfortable going out, showing off my glowing personality and gaining back my confidence. I’ve had a few good days recently and have felt overwhelming joy over not itching in public and being able to present myself with confidence and positivity. I’m a wonderful person with much love to share when I’m not wincing in pain!

Feature #14: Angelena & Naomi

angela-luck
Angelena Hope Luckeroth

Age: 28

Career: I was a server & and a guard at an art museum before I was forced by TSW to quit.  Went back to work at 5 months TSW in an entirely different capacity as a Personal Care Assistant & ceramic tilemaker.  Way less public positions.  I had to hid from the world for 5 months.  I felt subhuman, like a sewer mutant. With that said, embarking on TSW was the best thing I have ever done for myself and my health

When did you cease using topical steroids: Nov 11th 2015

What type did you use: Hydrocortisone 2.5 on face & neck. Triamincinolone full body, even on breasts

What is your favorite product for comfort? DSS (Dead Sea Salt) baths with a couple drops of Tea tree got me through the worst of it.  Spent SO MANY HOURS in the bathtub, sought refuge in the bathtub everyday.  I’m a MW (moisture-withdrawal) person so I never messed with creams & lotions much after embarking on TSW.

What is the hardest thing to deal with during this condition? TSW is crippling, it robs us of our precious time here on earth and alienates us from society.  I am a changed person forevermore.  I am humbled.  I feel like I have always had a great capacity for empathy and caring but this experience has brought me to a whole new level.

What is the first thing you will do when healed? I am going back to school to get my teaching license for Art k-12.  My skin condition (TSA) has ruled my life for far too long and I feel like once my withdrawal is complete I can move on with my life for the first time in YEARS.


Naomi Sarah Davies naomi

Age: 29

Career: Hospice Nursing Assistant

When did you cease using topical steroids: April 12th 2014

What type did you use: Dermovate, Betnovate, Elecon

What is your favorite product for comfort? Sudocrem (a UK zinc based cream) and tubigrip bandages

What is the hardest thing to deal with during this condition? The unrelenting severe pain and depression, not being able to mentally cope.

What is the first thing you will do when healed? I went on holiday and swam and got a tan!

Feature #13: Ariana & Hayley

ari-mundAriana Yunda

Age: 30

Career: unemployed due to TSW

When did you cease using topical steroids: August 23 2016 (third try)

What type did you use: I can’t remember every kind. I’ve been using for 29 years: hydrocortisone, prednisone, clobetasol, betamethasone, Elidel, Mometasone Furoate and tons of injected immunosuppresants like Bethaduo and Ciclosporine.

What is your favorite product for comfort? It changes, but lavender essential oil has helped as sleeping aid (I put it in my feet every night),  zinc oxide when oozing and lately a spray called MR. Wheatgrass that I put on my skin when I get out of the shower and reapply every time I feel dry. Any other moisturizer, whether it’s a cream or oil, burns.

What is the hardest thing to deal with during this condition? Having the symptoms of the shivers, the oozing, the no sleep, the crazy diets stopping my life.

What is the first thing you are going to do when you are healed? Jump in the ocean, work out and dance without worrying about my sweat burning. Start working again! I became a therapist in the process 🙂 I want to help others.


Hayley hayley-szabo

Age: 24

Career: Unemployed for two years due to TSW

When did you cease using topical steroids: 17 December 2014

What type did you use: Diprosone and advantan (very potent)

What is your favorite product for comfort? Zinc balm and ice packs!

What is the hardest thing to deal with during this condition? The severity of my facial symptoms, the lack of independence,  having to put my life on hold and the bloody heinous OOZE…

What is the first thing you are going to do when you are healed? I’m going to do everything I had to put on hold! I want to start working again, I want to go back to uni and get my masters, and I want to travel to Europe with my boyfriend!