- Pin it
- SubscribeUnsubscribe
- Embed
Corey Crawford hasn't added a story.
Sara or, Firuzeh to her family, was diagnosed several years ago with Stiff Person Syndrome. Stiff person syndrome (SPS) is a rare neurologic disorder found mostly in people with severe auto-immune disorders. After approximately a six year search across several states for a diagnosis, she began Intravenous immunoglobin (IVIG) in Late 2011. The frequency required today is weekly. She has a large outstanding bill with the Cancer treatment center where she’s treated. To continue treatment it’s important this be paid. Please help share her story globally & aid in reaching her goal.
Stiff person syndrome (SPS) is a rare neurologic disorder of unclear etiology characterized by progressive rigidity and stiffness. The stiffness primarily affects the truncal muscles and is superimposed by spasms, resulting in postural deformities. Chronic pain, impaired mobility, and lumbar hyperlordosis are common symptoms. Spasms can be violent and unpredictable, sometimes breaking bones and often leaving sufferers afraid to leave the home. Patients become very sensitive to touch and sound, which can sometimes trigger spasms. The exact mechanism of the condition is unclear. It has been established that SPS patients generally have glutamic acid decarboxylase antibodies, which seldom occur in the general population. The antibodies are often thought to be the cause of the condition.
SPS is difficult to diagnose because there is no specific laboratory test that confirms its presence. Cerebrospinal fluid and Electromyography tests can help confirm the condition's presence by finding antibodies against GAD and involuntary motor unit firing. Early recognition and treatment slow the disease's progression, but a majority of patients eventually are unable to function independently. Benzodiazepine-class drugs are the most common treatment; they are used for symptom relief from stiffness. Other common treatments include Baclofen and Intravenous immunoglobin. SPS occurs in about one in a million people and is most commonly found in middle-aged people. A small minority of patients have the paraneoplastic variety of the condition. Another variant of the condition, stiff-limb syndrome, primarily affects a specific limb. SPS was first described in 1956. Diagnostic criteria were proposed in the 1960s and refined two decades later. In the 1990s and 2000s the roles of antibodies in the condition became more clear.
Highlights
See all activity9Activity
Help Sara raise funds to pay for SPS Treatment Community
Our community shows our leading supporters and the contributions they've made or inspired by sharing our campaign.
How it works
To appear in our community, simply make a contribution to our campaign
and show your name, or inspire a contribution from someone else by sharing your personal link (below).
The more contributions you make or inspire, the higher you'll go and the more the campaign will benefit.
How it works
To appear in our community, simply make a contribution to our campaign
and show your name, or inspire a contribution from someone else by sharing your personal link (below).
The more contributions you make or inspire, the higher you'll go and the more the campaign will benefit.
Here's your personal link to share:
CopyDelete media item?
Delete this item from the media gallery? It will also be deleted from any related story update.
Set as ?
The campaign video will appear in social media and email.
The campaign cover picture will appear in social media and email.
The will appear at the top of your campaign page and in social media and email.
Reset ?
It will be removed from the top of your campaign and won't be used as default in social media and email. The will remain in the media gallery.
Embed
Share a link
Delete update
Delete this story update?
Any pictures or videos will remain in the campaign's media gallery.
Report campaign
Report submitted
Thank you. We take reports like yours very seriously. Our goal is to keep the community safe.
Please know that we may contact you for more information, but that we won't notify you personally of our decision. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Thank you. We've already received your previous report. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Tell us about the problem. Please fill in both fields below.
Record a video
Upload a video
Nothing grabs attention for your cause like a personal video. Take a minute or two to record one now. Record a short video message of support. Or upload one from your device. You can preview or redo your video before you post it.
Nothing grabs attention for your cause like a personal video. Upload a short video message of support. Upload a short video message of support. Or record one right now.
- Most effective video length: about a minute.
- Maximum length: 5 min.
- You can preview or redo your video before you post it.
Heads up! The existing video will be replaced.
Email your friends
Join our team
Tell people why our cause matters to you. Your personal message will encourage others to help. Easy, effective, optional.
Say it in video
Short personal videos by supporters like you are incredibly powerful. Record one right now and you'll help us raise more money. Easy, optional, effective.
Add a personal goal
Set a personal fundraising goal. You'll encourage more contributions if you do. And rest easy. There's no obligation to achieve your goal or bad consequences if you don't. Easy, optional, effective.
We have a video!
Video thumbnail
We'd love to show you our campaign video. Want to take a look?
, you're already on the team.