Sarah Hughes is someone who gives me great hope. She was diagnosed in 1992 with Systemic Juvenile Idiopathic Arthritis (SJIA). At just under a year old at diagnosis, she has never truly lived a 'normal' life.
She has spent a ton of time in hospitals and at home due to her illness. She's lucky to be alive right now. When she began these treatments, she wasn't sure what would happen. She knew that her life didn't really consist of living as much as existing, though, and took a chance on this stem cell therapy.
Like Sarah, I have SJIA and was told that I would likely die early. If I didn't, I'd be too crippled to really do anything. In 1993, latest research stated that I would be in a wheelchair by age eight.
I cannot convey the intensity of the horrible panic attacks that I began having as my eighth birthday approached. I would hide behind the couch and cry for hours.
The same happened when I started on biologic medications. I tried to record one shot to put on YouTube and it turned into two videos - an anxiety-ridden before and a tearful after.
These medications can hurt incredibly. We've got to figure out a better way.
The daily shot that I'm on has stabilized me for now. My labs have been normal, as far as inflammation goes, since September which is certainly a first. My heart wants to start thinking remission may be possible for me after all.
I know, though, that my body tends to build up resistance to medications quickly.
It may be time for me to get a passport and start thinking stem cells when this shot fails.
Video of Sarah's first Celltex treatment
About the author:
Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.