Tuesday, April 2, 2013

Day 2: The Top 5 Things to Know About Still's Disease #HAWMC

The primary illness that I deal with is Still's Disease, or Systemic Onset Juvenile Idiopathic (or Rheumatic) Arthritis. You can read about my personal story here. You can find out a little more about Still's here, Sir George Still here, and complications associated with the disease here.

The top five things I want people to know about Still's are:

  • It requires drugs used in chemotherapy and organ transplants, like many other forms of autoimmune arthritis 
  • It causes a malar rash and high spiking fevers (high enough they can cause brain damage). The rash is exacerbated by emotions, fatigue, temperatures, manipulation (Koebner phenomenon), and disease activity. My face isn't red because I'm fat and walking - it's red because I'm ill.
  • There are only technically two drugs on the market FDA approved to treat this disease, and they're usually the last in line to be used as treatments unless you find a very aggressive doctor. They also are some of the most expensive - and dangerous - drugs for autoimmune arthritis.
  • Some work with stem cells has been done with this disease. For many it did nothing. Some died in the process. Others survived and had remarkably improved disease activity, including remission.
  • It can kill. In fact, complications from this disease killed one of my greatest friends and fellow blogger, Laura from Still's Life. She was the first person outside my family I found with this disease, and she changed my life for the better in ways I can't even begin to put into words. She has been gone for nearly four months and I still have to stop myself from texting her about both of our upcoming wedding plans. I miss her every day.
I also live with a number of conditions related to my Still's - asthma, psoriasis, fibromyalgia, Sjogren's Syndrome, scoliosis, and a number of other bone deformity issues.

2 comments:

  1. Great post, Kirsten. Added your link to my Day 02 post because you said much more than I did so perfectly. Looking forward to reading the rest of your HAWMC posts :)


    ReplyDelete