Tuesday, September 17, 2013

Stills Disease: My experience

Today I updated the About page on my website with the story of my experience with a rare condition called Stills Disease:

In July 2013 I had to put my business on hold as I was diagnosed with a rare condition called Stills Disease (read about it HERE).  It is in the family of rheumatoid & auto-immune disorders, with symptoms including joint & muscle pain, sore throat, splotchy rash, and fever spikes.  There is very little documentation or research about it in the medical community, and there is no specific treatment plan or medication designated.  My rheumatologist says it is treated for the most part as one would treat Rheumatoid Arthritis. Initially the doctors didn't know what I had - I was tested for almost all infectious diseases, from Lyme to Rocky Mountain Spotted Fever to even Syphilis (everything came back negative).  My diagnosis of Stills Disease was made after everything else was ruled out.  There is no test specifically for Stills Disease; it is a "diagnosis of exclusion".  Similar to diseases like Multiple Sclerosis, Stills disease is not contracted from an outside source, nor is it hereditary or contagious.  My doctors believe that exposure to an infectious disease such as Mononucleosis, Parvovirus, or even Strep Throat within the previous 6-12 months brought the disease out, even though I did not contract anything.

Trying to stay positive during my 10 day hospital stay as doctors worked to find out what I had

Due to extreme pain in ALL my joints, which went away after 2 weeks and was replaced with full body muscle pain & weakness, I was unable to walk, sit up in bed, stand, sit down, use the bathroom, bathe, or make or eat meals without assistance for about 6 weeks.  Around 2-3 times per day for about 8 days I experienced uncontrollable seizure-like shivering (called Rigors) preceding fever spikes as high as 104.4 degrees F. These went down in about 2 hours with Ibuprofen.  I experienced some light-headedness in the mornings, due to either low blood sugar or low blood pressure, and passed out once.  Luckily I was returning from the bathroom and was being supported by both of my amazing parents, so I was not injured in any way.  Throughout my illness I was hospitalized 3 times, the initial admission lasting 10 days, the other two for only 2-3 days due to consequent symptoms returning.

Here I am on oxygen in the hospital to prevent the shakes preceding the fever spikes.
The splotchy, salmon colored rash consistent with Stills Disease.  It covered my entire body except neck & face.
The rash on my upper leg.  Luckily this rash didn't itch or burn.

Slowly, under the care of some amazing doctors and much trial and error with medications, a treatment plan was found.  Upon my initial discharge I was sent home on a regimen of Prednisone - to which I discovered I have an adverse reaction that included a new type of rash (looked like red goosebumps on my entire body except face & neck) and the most horrible prickly burning itch.  These side effects lasted for 4 weeks before it dawned on me that the Prednisone was the culprit.  My wonderful doctor, believing that the patient best knows their own body,  listened to me and put me on another steroid.  Within a week and a half the new rash & itching was completely gone!

On September 12 I felt I was recovered enough to reopen business and get back to a normal life.  I took my Etsy shop off vacation mode and posted about my triumphant return on Facebook, Twitter, and here on my blog.  As of today I can do all normal activities of daily living, though my leg & arm muscles are a bit weak and I experience fatigue after too much exertion.  I plan on researching Stills Disease support and see if the medical community has any research ongoing.  I'd love to start a foundation for peer support & research funding, in which case I would begin donating a portion of my profits to it.

If you or a loved one have Stills Disease & would just like to share your story, inquire about my trials with medication, receive referral info for my amazing doctors (Delaware County, PA), or just talk to someone who knows what you are going through please feel free to email me or leave your comments below.  You can also visit this wonderful website, Stills R Us, for support & awareness:


  1. i am so glad to hear your story my hasband has still disease we are from egypt he enter the hospital for 2 months
    finally we detect that he have still disease this from 6/4/2014
    now he take Prednisone 40mg/day with calcium and vitamin d
    i hope you advise me for your treatment

  2. I have been diagnosed since Dec. 2011. I am just now off of my prednisone for the first time. I have been taking Remicade infusions for the past two plus years as well. I am finally feeling more like my self. Your story is nearly identical to mine right down to peeling like a snake head to toe, only it took nearly nine months to get diagnosed. I am 43 now. I own my own beauty salon in MO. I hope you are still in the recovered category. Thank you for telling your story.