Feature #5: Levi & Alicia

levi-akkermanLevi Akkerman

Age: 7

Career: Student

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? During TSW was Lemongrass balm and zinc balm from the Home Apothecary

What was the hardest thing to deal with during this condition? Nights are the hardest part of TSW, it’s like around 3am the whole body heated up with insane itch.

What is the first thing you will do when healed? Live life! We (his mother and Levi) got sporadic breaks between flares and we just tried to live happy and normal when we could. Went to Adventureland and swimming, but the best thing is just seeing his beautifully clear and smooth skin. I just rub it in disbelief and pure joy now.


Alicia Akkermanalicia-akkerman

Age: 38

Career: Homemaker

When did you cease using topical steroids: September 6, 2013

What type did you use: Desodine cream, then ointment, then Triamcinolone

What is your favorite product for comfort? Renew Intensive skin therapy lotion was my favorite product during TSW, and ice!

What was the hardest thing to deal with during this condition? I had swollen, oozing hands for the first year and was very handicap with 5 children, 1 going through full body TSW. Mornings were the hardest and would soak them in ice water to help numb the intense itch. I lived in cotton white gloves for about 6 months.

What was the first thing you did when healed? Mainly I am just so thankful for my hands now. Being able to cook and prep food again!

Feature #4: Adele & Tessa

Adele Newmanadelenewman

Age: 30

Career: Barmaid

When did you cease using topical steroids: July 2015

What type did you use: Prednisone. Eumovate, Elecon, Betnovate,Trimovate.

What is your favorite product for comfort? Aveeno skin relief lotion and vaseline

What is the hardest thing to deal with during this condition? The pain and being unable to move somedays. Not being able to look after/do things with my 2 kids the way I used to.

What is the first thing you will do when healed? Take my kids swimming, do as much activities as I can with my kids, and treating myself to new clothes that don’t have to be cotton and long sleeved!


Feature #3: Megan & Sheryl

Megan Garza megan-garza

Age: 25

Career: Unemployed due to TSW

When did you cease using topical steroids: September 2014 last application of TS

What type did you use: Clobetasol, Triamcinolone, Fluocinolone and Protopic 0.1% ( I’ve also been on iv/ oral rounds)

What is your favorite product for comfort? Lemongrass balm, avene thermal spring water, & organic rose water

What is the hardest thing to deal with during this condition? The beginning days of TSW when I had cracks all over my face/ neck and oozing. Having my hands completely covered with RSS as well as oozing blisters on all my fingers. Self esteem has been shot down completely due to TSW as well as having anxiety.

What is the first thing you will do when healed? Wear a short sleeve shirt with jean shorts. Then I would take off to a beach and wear a bikini 24/7 and soaking up some sun rays.


sherylmorrisSheryl Morris

Age: 36

Career: Systems Support Officer, University of Dundee, Scotland

When did you cease using topical steroids: 1st time Sep 2010, 2nd time was 6th Jan 2013 (however was on orals between Mar 2013 and Dec 2013). Date stopped using any type of steroids 21st Dec 2013

What type did you use: Hydrocortisone, Elocon, Dermovate, Betnovate creams/ointments. Also used Haelan Tape (tape impregnated with steroids), oral steroids (prednisolone), hair mousse (betnovate in it)

What is your favorite product for comfort? The turning point for me came when I started using a combination of Milton bleach solution on patches skin that kept getting infected along with Manuka honey under cotton gloves for my hands overnight. I also found using Moogoo shampoo, conditioner, baby bubbles wash and nut oil free moisturiser really helping. I also use a nettle moisturisers made locally in Scotland. I used several different products over the years, some helped at different stages of the process – for example, heavy 50/50 really helped my skin when it was red raw but trapped heat and bacteria in so in the long run actually made it worse, and more itchy.

What is the hardest thing to deal with during this condition? Recurring skin infections, lack of support from doctors/dermatologists, the uncontrollable itch, the pain, the wet feeling of ooze, feeling disgusted, the flakes of skin EVERYWHERE, depression, anxiety

What is the first thing you did when you healed? First thing I did when I got my first real break was go to Glastonbury festival and few months later got married, I did have several skin infections after this so it took a while longer before I felt truly healed.


 

Feature #2: Ava & Christine

Ava Knappava-knapp

Age: 5 years old

Career: I start kindergarten next year

When did you cease using topical steroids: January 16, 2016

What type did you use: All kinds but chlobetasol foam .05%  is the last one I used.

What is your favorite product for comfort? Homemade zinc cream and Dead Sea salt baths

What is the hardest thing to deal with during this condition? The burning and itching has been the hardest part. I really didn’t like all the skin I found in my bed. I’ve lost a lot of hair and some fingernails along the way, too.

What is the first thing you will do when healed? Wear dresses and sandals comfortably!! I also want to take a dance class again and be able to wear the recital outfit without having a reaction this time.


christine-lozanoChristine Lozano

Age: 26

Career: Marriage & Family Therapist

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

What type did you use: Not sure exact names of topicals, but many different creams/ointments of various strengths. Most recently used oral steroids (Prednisone) April-June 2016 (for 8 weeks)

What is your favorite product for comfort? Zinc cream. Many natural supplements prescribed from my wonderful naturopthic doctor.

What is the hardest thing to deal with during this condition? There are absolutely no words that could describe the physical, mental, and emotional pain of this journey. Every single day-to-day activity became an excruciatingly painful moment.

What is the first thing you will do when healed? I wouldn’t consider myself healed, but I’m in the process! When I am healed, I will exercise, sweat, take a completely pain-free shower, and smile.


 

Feature #1: Joanne & Sandy

Joanna Andersonjoanna-anderson

Age: 36

Career: Daycare provider. Forced to close business due to RSS. Unemployed.

When did you cease using topical steroids: April 2015

What type did you use: Clobetasol propionate.

What is your favorite product for comfort? Curel itch defense with ceramide.

What is the hardest thing to deal with during this condition? Having to be alone taking care of my newborn despite the pain.

What is the first thing you will do when healed? When I am healed I will help others in need.


sandy-weindbergSandy Weinberg

Age: 53

Career: Customer service Representative for ReadyRefresh by Nestlé (Nestlé Waters)

When did you cease using topical steroids: I stopped using prednisone the beginning of June  2015

What type did you use: Mainly oral prednisone, also Triamcinolone, Desonide Cream and Clocortolone Pivalate Cream

What is your favorite product for comfort? I have a few favorites: Stephanie’s Home Apothecary Body balms, coconut Oil and Cerave products, also started using Germolene cream…love it!

What is the hardest thing to deal with during this condition? Working out and running. Saying no to going out with friends. Not being able to sit in the sun. Missing a lot of time from my job .

What is the first thing you will do when healed? Possibly run a marathon! Spending more time with family and friends. Just enjoying life! Traveling and meeting some of the others who have gone through like myself.