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.


 

Interview #1: Joey VanDyke

JoAnne (Joey) VanDyke14364711_10208836120492432_2954530378884912840_n
Southwest Michigan

“Three things will last forever–faith, hope, and love–and the greatest of these is love” – Apostle Paul

When did you start using topical steroids? I don’t know exactly what age as I had eczema as a baby, but I’ve used it since childhood. My older sisters remember my mother rubbing some kind of cream on the inside of my knees and elbows and putting socks on my hands every night when I was young. I remember chewing holes in the socks to scratch.

What was the name of the topical steroid? I only remember a few names of TS since my eczema started in my infant days and my mother may have used them on me as well. Aristocort, Westcort, Kenalog and Triamcinalone.

Were you ever prescribed more potent steroids? I think the ones I was prescribed were pretty much the same strength as my fingers would clear well with the ones I used.



How did you find out about RSS? It took about five months of trying to fix my skin myself with various remedies before I found out about Red Skin Syndrome. The TS stopped working for me at age 55 in late September 2010 and my chest and stomach broke out into progressive weird, itchy hives all that would not clear up, even with the steroids. My doctor prescribed oral steroids for me but I did not take them at that point.I surfed the internet and found Dr. Wheatgrass’ forum and emailed him for help. He advised me through his online support group to use small amount of oral steroids and to keep tapering down from them until it cleared, but after a few weeks of that, I realized it only delayed the inevitable.

By this time, of five months into ceasing all topical steroids and trying orals, I was desperate. My body now had all kinds of symptoms going on, spreading rashes, red, hot burning skin over much of it and the classic “red sleeve” on both arms that distigushes Red Skin Syndrome from eczema and other skin diseases.

I ended up surfing the internet once again in total anxiety with the phrase “steroid cream side-effects” and Kelly Palace’s “Addicted Skin” website popped up. I immedieately emailed her and she answered me back the next day, explaining her red skin symptoms and I had that emotional light bulb moment so many of us describe. I joined her small Google support group and learned all about Red Skin Syndrome there and got heavily proactive in the cause to prevent RSS and find ways to treat or cure it.

What made you feel you had RSS? The many symptoms of itchy hives, spreading rashes, hot, burning skin, lumps, freezing cold, sweating, insomnia, nerve zingers, weight loss, eye problems, “elephant” skin, insane itching and flaking… did not match any eczema I’d ever experienced. Once I saw Kelly’s same symptom pics, heard her story along with the others in the support group, I knew I had the same steroid-induced disease as they did.

Were you diagnosed by a doctor? No, my doctor had never heard of steroid-induced anything and was at a loss for what it was. Dr. Rapaport eventually spoke with her on the phone and explained RSS to her and how to keep me comfortable the best she could.

Did you have a supportive doctor? Yes! She went above and beyond to see me when I needed her,  monitor my symptoms, listen to concerns, prescribe comfort meds and check my bloodwork. She felt very bad that this physical trauma had happened to me. She is now supportive of my work with ITSAN and any patient that would come to her with it.

What were your first symptoms? Oddly enough, mine were itchy hives and then spreading rashes. The burning hot skin and red sleeves did not manifest until five months after stopping TS. Some people are what I call “slow burners” like I was.

Was/Is your family supportive? Friends? Yes, my family was very supportive as they had never seen me this sick. It felt like I was going through Chemo treatments, had third degree burns and was literally wasting away. They were scared and stood by me lovingly and immensely. My grandchildren made me get well cards and poems often, which would bring on a river of tears every time  they brought them to me. Friends were not as supportive, simply because they didn’t know what to say or do and I could not visit with anyone very long due to the scratching and living mostly in my bathtub and bedroom for two years.

Have you ever been to a hospital for this? Why? Yes, I was peaking in my worst symptoms in November and December 2011, which was 15 months after stopping TS. I had sever nerve pain all over my body which could have been intensified by the fibromyalgia that I had been diagnosed with in 2000. I had such bad nerve pain and was so red and frail that I could not function anymore and thought I had sepsis.   I went to the ER and the doctor said I did not have sepsis and wanted to prescribe oral steroid for me. I refused and he walked out of the room and said he could not help me then.

Two weeks later I went into another local hospital ER with extreme nerve pain, burning and fatigue, still. This doctor was a lady who believed me and she gave me an IV of pain meds, sedative and stomach buffers. I ended up using those meds and others often for the next 15 months as my journey was hard.

What was the hardest part of this disease? The 24-7 nerve pain and bone deep itching that lasted way too long.

How long did RSS last for you? A total of 62 months but the worst phase was for 27 months. About 98 per cent of my skin healed after 27 months but it took another 35 months of very slow, almost stagnant healing on that last 2% of my skin to heal.

What did you use as comfort measures during this time? Prayer, keeping hope and releasing my tears often. Hot Epsom salt baths about six times a day, heating pad or hot water bottle, white palm oil, vinyl gloves on my hands and various meds.

Are you employed? Fortunately, I was not employed as the fibromyalgia I was diagnosed with and a ruptured disc in my back had taken me out of the physical work force years prior.  I spent all my time when not in the bathtub, helping others in the support group.

Have you gone to therapy or wish you had? I have been to therapy before due to past trauma in my life resulting in PTSD so I utilized all of my counseling “tools” and did the best to keep myself sane and hopeful. The support groups were a lot of therapy for me and that is why I started a couple more.  I now go to physical therapy once a month for osteoarthritis, fibromyalgia and chronic joint and bone problems, which I strongly suspect were helped along by the steroids. My hope is that my body is still healing on the inside as well as my skin did.

If there is one thing you could say to another sufferer, what would it be? You are not alone. Take this one hour at a time and don’t set a time for your recovery, it’s too discouraging when it does not end when you think it should. Keep hope in your mind and heart for healing, even if it’s not the total healing you desire. This is not a lifetime disease, many RSS vets have come through this recovered and gone on with their lives.  It’s not what happens to us in life but how we respond. This suffering can make you a better, more compassionate person if you allow it.  Become proactive to help get RSS known and prevented. Share your story, encourage others and stay positive. This will pass!


Thank you Joey for such a great interview!

Patients Like Me

One of the biggest questions concerning Red Skin Syndrome is just how many people have suffered/are suffering through the condition. With the high number of misdiagnosed patients, there will never be an accurate number until this condition is accepted in the medical community by all practicing doctors.

However, there are ways of getting our numbers out into the world.

One site that can help in this process is PatientsLikeMe.

PatientsLikeMe allows you to not only enter a diagnosis of Red Skin Syndrome (of which 22 on the site have logged), but it allows you to keep track of your progress.

There is:

  • An About Me section
  • A Height and Weight section (can also find BMI)
  • An InstantMe section (you answer the same question everyday to track yourself)
  • A Quality of Life section
  • A Labs and Tests section
  • A Symptoms section (pain, insomnia, etc)
  • A Treatments and Medications section
  • A Hospital Tracking section

And, to top it off, you can follow all those with your diagnosis to see their progress and stories.

It takes about 15 minutes to set up (you get 3 stars for setting up all the categories). The most important part however is putting in “Red Skin Syndrome” as the diagnosis. That way, it can track how many on the site have this condition.

If you are not able to monetarily help the documentary project (RSS can drain our pockets), this is an important and powerful way to assist in this movement. It may not be a true database, but it certainly can help us see how many may be suffering through this. Please, take this time to fill out your profile.

PatientsLikeMe 


Thank you so much for taking the time to raise awareness about the overprescription of topical steroids and how urgent it is to get this message across in the medical community.

Medical Terminology Explained

One of the many ways we can feel left out of the medical loop is the jargon that leaves us perplexed and, most likely, uninterested in trying to understand our ailment. The doctor either says some fancy words or we end up reading a pamphlet that looks like ancient hieroglyphics. It can be daunting and when we just want relief, we don’t delve any further than the reaching to take a prescription from the doctor.

The time has come for us to decipher some very important medical terminology so we, as patients, can be best informed about our condition and what may lie ahead if we take a certain treatment.


Antiproliferative: of or relating to a substance used to prevent or retard the spread of cells, especially malignant cells, into surrounding tissues.

Atherosclerosis: a disease in which plaque builds up inside your arteries. This can cause different problems including coronary heart disease, carotid artery disease, and chronic kidney disease.

Atrophy: waste away, typically due to the degeneration of cells, or become vestigial during evolution. Picture

Axillae: Armpit

Bioethics: the study of the typically controversial ethical issues emerging from new situations and possibilities brought about by advances in biology and medicine. It is also moral discernment as it relates to medical policy and practice.

Corticosteroids: any of a group of steroid hormones produced in the adrenal cortex or made synthetically. There are two kinds: glucocorticoids and mineralocorticoids. They have various metabolic functions and some are used to treat inflammation. The ones we usually deal with are glucocorticoids that stop inflammation.

Candidiasis: infection by fungi of the genus Candida, generally C. albicans, most commonlyinvolving the skin, oral mucosa (thrush), respiratory tract, or vagina; occasionally thereis a systemic infection or endocarditis. It is most often associated with pregnancy,glycosuria, diabetes mellitus, or use of antibiotics. Picture

Concomitant: naturally accompanying or associated.

Cutaneous: of, relating to, or affecting the skin.

Demodicidosis: skin disease of the pilosebaceous units associated with human Demodex mites that involves predominantly the face and head. Picture

Edema: a condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body. Picture

Efficacy: the ability to produce a desired or intended result.

Emollient: a preparation that softens the skin.

Erythema: superficial reddening of the skin, usually in patches, as a result of injury or irritation causing dilatation of the blood capillaries. Picture

Exacerbation: an increase in the severity of a disease or its signs and symptoms; a worsening.

Granuloma Gluteale Infantum: a rare skin disorder of controversial etiology characterized by oval, reddish purple granulomatous nodules on the gluteal surfaces. Picture

Gynecomastia: enlargement of a man’s breasts, usually due to hormone imbalance or hormone therapy. Picture

Hirsutism: abnormal growth of hair on a person’s face and body, especially on a woman. Picture

HPA axis: The hypothalamic–pituitary–adrenal axis is a complex set of direct influences and feedback interactions among three endocrine glands: the hypothalamus, the pituitary gland(a pea-shaped structure located below the hypothalamus), and the adrenal (also called “suprarenal”) glands (small, conical organs on top of the kidneys).

Hyperkeratosis: thickening of the stratum corneum (the outermost layer of the epidermis, or skin), often associated with the presence of an abnormal quantity of keratin, and also usually accompanied by an increase in the granular layer. Picture

Hyperpigmentation: the darkening of an area of skin or nails caused by increased melanin.

Hypertrichosifs: a skin abnormality that results in excessive growth of hair. It can be localized to one part of the body, or affect in full. It can affect men or women and is mostly secondary to a genetic disease that causes a hormonal disorder. Picture

Hypopigmentation: the loss of skin color. It is caused by melanocyte or melanin depletion, or a decrease in the amino acid tyrosine, which is used by melanocytes to make melanin. Picture

Iatrogenic: of or relating to illness caused by medical examination or treatment.

Immunosuppressive: (chiefly of drugs) partially or completely suppressing the immune response of an individual. Topically, there is Protopic and Elidel.

Impetigo: a contagious bacterial skin infection forming pustules and yellow, crusty sores. Picture

In vivo: (of a process) performed or taking place in a living organism.

Intertriginous: area where two skin areas may touch or rub together, like armpit or groin

Kaposi Sarcoma: a rare tumor that is named after the dermatologist who first described it in 1872. It is caused by a type of herpesvirus. Picture

Lichen Sclerosis: an uncommon condition that creates patchy, white skin that’s thinner than normal. Picture

Malassezia Folliculitis: an inflammatory skin disorder that typically manifests as a pruritic, follicular papulopustular eruption distributed on the upper trunk of young to middle-aged adults. Picture

Mastocytosis: disorder that can occur in both children and adults. It is caused by the presence of too many mast cells in your body. You can find mast cells in skin, lymph nodes, internal organs (such as the liver and spleen) and the linings of the lung, stomach, and intestine. Picture

Milia: a small white or yellowish nodule resembling a millet seed, produced in the skin by the retention of sebaceous secretion. Picture

Molluscum Contagiosum: a chronic viral disorder of the skin characterized by groups of small, smooth, painless pinkish nodules with a central depression, that yield a milky fluid when squeezed. Picture

Morbidity: is a term used to describe how often a disease occurs in a specific area.

Occlusive: Of or being a bandage or dressing that closes a wound and keeps it from the air.

Ocular Hypertension: an eye pressure of greater than 21 mm Hg. It usually occurs for a long time and doesn’t match with glaucoma.

Perioral Dermatitis: a common skin rash that mainly affects young women. The rash affects the skin around the mouth. Use of a steroid cream on the face seems to trigger the condition in many cases. Picture

Phimosis: a congenital narrowing of the opening of the foreskin so that it cannot be retracted.

Purpura: a rash of purple spots on the skin caused by internal bleeding from small blood vessels. Picture

Stellate Pseudoscars: white, irregular or star-shaped atrophic scars occurring over the sun-exposed areas of the forearms. Picture

Stratum Corneum: the horny outer layer of the skin.

Striae: a linear mark, slight ridge, or groove on a surface, often one of a number of similar parallel features. Picture

Synthetic: made by chemical synthesis, especially to imitate a natural product.

Systemic: of, relating to, or affecting the entire body.

Tachyphylaxis: rapidly diminishing response to successive doses of a drug, rendering it less effective. The effect is common with drugs acting on the nervous system.

Telangiectasia: a condition characterized by dilation of the capillaries, which causes them to appear as small red or purple clusters, often spidery in appearance, on the skin or the surface of an organ. Picture

Tinea Incognito: a fungal infection (mycosis) of the skin masked and often exacerbated by application of a topical immunosuppressive agent. The usual agent is a topical corticosteroid (topical steroid). Picture

Vasoconstriction: the constriction of blood vessels, which increases blood pressure.

Vitiligo: a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause. Picture