Home : What is Nephrogenic Systemic Fibrosis (NSF)?

What is Nephrogenic Systemic Fibrosis (NSF)?

Nephrogenic Systemic Fibrosis is a recently discovered disease that occurs in kidney patients. A strong correlation has also been found between NFS and gadolinium containing MRI contrast dyes. This disease affects the skin and results in tightening and swelling, and may cause contractures due to the thickening of the skin, limiting movement of the joints. A number of treatments have been tried and are being investigated, though none have proved consistently successful.

Who is at Risk of Contracting Nephrogenic Systemic Fibrosis?

So far, Nephrogenic Systemic Fibrosis has only been found in patients with kidney disease. Men, women, the old, and the young are all affected by this disease. Other factors that may be associated with Nephrogenic Systemic Fibrosis are coagulation abnormalities, deep vein thrombosis, recent surgery, or the failure of a transplanted kidney. Although the FDA has recently issued a warning about the possible link between gadolinium containing contrast dyes, there is as yet no proven cause and effect factor between these two, but strong correlations are shown.

Symptoms of Nephrogenic Systemic Fibrosis

Nephrogenic Systemic Fibrosis is a disease that develops over days or weeks and involves swelling, tightening, and thickening of the skin, which may also lead to contractures and make the movement of joints difficult, thus making it impossible for the patient to walk. The skin may also develop red or darkened patches, plaques, or papules and the patient may experience burning, itching, or severe pain in the area. The skin also develops an orange-peel texture and may feel woody.

Treatment of Nephrogenic Systemic Fibrosis

A number of treatment options have been tried, though none have yet proved consistently effective. These treatments include oral steroids, topical Dovonex, extracorporeal photopheresis, plasmapheresis, Cytoxan, Thalidomide, ultraviolet therapy, physical therapy, Pentoxifylline, high dose intravenous Ig therapy, and renal transplantation. In general though, improving renal functioning does appear to slow or arrest the development of Nephrogenic Systemic Fibrosis.

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Did you have an MRI (Magnetic Resonance Imaging) or MRA (Magnetic Resonance Angiography) scan done before your symptoms began? Yes No
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Did you have kidney failure, kidney function deficiency, or other kidney problems at the time the scan (or scans) were done? Yes No
Describe the kidney problems you had.

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PERSONAL INFORMATION
First Name: *
Last Name: *
Address:
City:
State:
Zipcode:
Phone: -- ext.
Work Phone: -- ext.
E-mail Address: *

CASE INFORMATION
Have you been diagnosed with NSF (Nephrogenic Systemic Fibrosis) or NFD (Nephrogenic Fibrosing Dermopathy)? Yes No
When and where was the diagnosis made?
When did your problems start?

Describe your symptoms and how they developed.
Did you have an MRI (Magnetic Resonance Imaging) or MRA (Magnetic Resonance Angiography) scan done before your symptoms began? Yes No
Where and when was the scan (or scans, if more than one) done?
Did you have kidney failure, kidney function deficiency, or other kidney problems at the time the scan (or scans) were done? Yes No
Describe the kidney problems you had.
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