I have Erythroderma.  I expect to get well, and I continue to research.  The answer is out there - and I plan to find it! 

In this diary, I'm attempting to give an honest view of what this disease does to a person.  No matter how positive an attitude I have, facts are facts.  This is how it is - no glossing over the truth.

Erythroderma has proven to be a long, hard road - 14 years!  I've learned a lot in that time and I continue to search for answers.  This picture shows one of my painful flares. 

For this entry, I want to document a complete history of my disease.  then future entries will be current progress and information found through my research.

From 1993 through 1996, I had occasional sun sensitivity (rash) only on exposed areas.   I blamed this on a medication I was taking that warned to avoid excessive sun exposure.  Each time, it cleared within a few days, so I didn't worry about it.  With time, parts of my body would become red more frequently even though I  carefully avoided the sun. 

In 1997 through 1999, it worsened significantly, in that my skin would flare more often, and it covered a larger part of my body.  First the arms and neck would be red (burned) where I was exposed, but within a few hours, it would spread to my chest and upper legs.  Each episode would last from a week to 10 days.  As time passed, this happened more often, even without sun exposure.  My skin was painful, then as it healed, was terribly itchy.

I researched "sun allergy."   The description fit and I learned that not only the sun, but also fluorescent lights and my computer screen caused a flare.  I purchased sun protective clothing (hats, gloves, pants, & shirts).  Even with those, I still could only take around 20 minutes of sun while wearing this clothing.  I could do 40 minutes at the computer or at Wal-Mart, under the lights (both while wearing the sun protective clothing).  Sunscreen made my skin even sorer.  I also bought a UV-ray blocking screen for my computer.

Each Dermatologist gave a different diagnosis.  I saw 6 doctors in all.  I had all kinds of treatments, pills, lotions, ointments, steroids, shots, but none of them worked.  I steadily grew worse.

By 2000, my skin was red over 70% of my body most of the time.  It cleared for 2-3 weeks now and then, but always returned.  My bright red skin was hot to the touch, painful, and itchy.  My muscles and joints ached.  The red skin became raw and swollen.  Low fever and chills had me unable to function.  My palms and soles thickened and became slick, causing me to fall down the stairs while barefoot.  It took 3 spills down 15 steps before I figured out this new development in my disease.  Now I always wear slippers or shoes.

Red skin covers at least 90% of my body.  Since the year 2004, I have not  seen my normal white skin, although it does improve enough that the other symptoms go away.    Between severe flares, I am left with excessively dry itchy skin that is a softer color of red.  Those are my "good days," and I can function.  It is a joy to clean house or go somewhere.  Nights are not so good because of intense itching.  It is so severe, it is almost like pain.

I recently found there is a link between the digestive system and autoimmune diseases.  I have had that problem all my life - maybe wheat intolerance?  I am starting on a gluten-free diet to see if it helps my stomach.  Wouldn't it be wonderful if it also helped the Arythroderma!

I won't go into what it is like to feel hope, then have it dashed by the next flare.  Those of you who have this disease know what I am talking about.  I've worked hard to keep a good attitude during the "bad days," and I've learned to cherish the "good days."  I do what I have to do and thank God for all that is good in my life.

As time permits, I will post things that I have found helpful in making my skin more comfortable.  If my dietary changes help, I'll share the info with all.  I'd be delighted to help anyone who is fighting this disease.