I was 12 years old when I first started seeing signs of eczema. It started out in small places like the crook of my arm, scalp, upper lip and around my ears. For the first several years, as it continued to spread, I was told I had dry skin, ringworm, an allergic reaction to my earrings and eventually Atopic Dermatitis and sent home with a tube of Hydrocortisone. As the years went on and the eczema worsened, I saw numerous doctors/specialists. Each appointment brought so much hope, yet each one more disappointing than the last. 

Occasionally, I would get a little reprieve but each time it would resurface, it would come with new spots. This only added to the stares and rude comments and questions. Sometimes it amazes me the things people will say. Although I have learned to better deal with both ignorant and cruel people, 35 years later, it still crushes me.

I was 22 when I had my first really bad outbreak. My grandmother got me an appointment with her doctor who finally diagnosed me with eczema and prescribed me prednisone.  It was like a miracle! I was completely clear for the first time in years! After I completed the cycle, it stayed clear for a little over a month and then it was back.

Since then I have tried many topical creams and ointments, such as Clobetasol, Fluocinonide and triamcinolone. I have tried allergy meds and shots as well as various cleanses, enemas and laser light treatment; some of which worked for a little while and then lost its effect.

I have been turned down and let go from jobs as a result of the severity of my skin issues. My daughter has had to defend me to her friends throughout the years as I would attend school functions. Most days it hurts too much to hold or play with my toddler son. I have had to be taken to the emergency room wearing nothing but a sheet wrapped around me because I couldn’t bear to put clothes on. When I am able to get dressed, my clothes usually end up riddled with blood stains as well as my bed sheets. Some days all I want to do is cry but even that hurts.

The eczema causes the skin on my eye lids to peel including the underneath part resulting in layers of skin trapped and floating around until I can locate and remove them.  This happens daily. Through the years it has created scar tissue over my tear ducts causing my bottom lids to droop down so far that not only do I constantly appear to be crying, I am unable to fully close them even as I sleep. The doctors at UCSF offered to perform a skin graft on my lower lid as well as implanting stints where my tear ducts should be. I was told that although the surgery went well, until I found a way to combat the eczema, this problem could not be corrected.

I have seen hundreds of doctors and they have all been baffled by the severity. Most of them usually ask me what they should prescribe, some have taken pictures, many have promised they would ask around and get back to me, and a few have actually said they could no longer treat me cause we weren’t seeing any results. It now covers most of my entire body and face.

I am now 38 and feel desperate and miserable and just about all out of hope of ever being free of this horrible condition. I try to stay positive as I watch it continue to worsen each year, but every month that becomes more and more of a challenge. I’m at the point now where to see any results I have to take 90mg of prednisone and rather than getting a few months of relief, it immediately returns the day after my first taper down. So at best, I am fairly clear for almost 2 weeks and it is unsafe to do more than twice a year. The rest of the year I am just one big bloody, crusty, itchy, burning and seeping scab. If anyone can help me… PLEASE!       
Update: 
Eight years ago, my friend Donna Wilson sent my story to some philanthropic media outlets (Oprah, Dr. Phil, Dr. Oz) in the hopes of getting some help, and I wrote the above as my story thus far. 

     Since then I have continued to struggle with the pain and absolute heartbreak of this condition.  I was prescribed Methotrexate and participated in a lengthy trial of Dupixent - each with minimal to no success.  I am at the point where the Prednisone provides relief for only about as long as I take it and even at that the relief I get from it is a fraction of what it once was.  

      During one such period a couple of years ago, my skin was clearer than it had been in a long time, to the degree that I felt like I looked somewhat normal again.  I took a cheap rural riverboat cruise for the afternoon, and after a conspicuously long time of waiting for a seat to open up during the dinner portion, the woman I was eventually seated next to nervously asked if I was contagious. After I assured her that I wasn't, she went on to say that she didn't mean to offend me by asking, it's just that all of the other passengers on the boat were talking about it.  It's hard to explain how embarrassing something like that is to hear, but more so how alone it makes me feel.

      I'm 46 now and have two more children since the time I worried about being able to keep up with my toddler son, and honestly things have gotten significantly worse with my condition. I am eternally grateful that I have friends and family that treat me like they aren't taken aback by the decline in my health and appearance. Ultimately, it's the love of my children and the brief respite I get from feeling normal for a moment when I'm with my friends that keeps me going.                                                         Gratefully, Casey Greene