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Nephrogenic Systemic Fibrosis FAQ

What is Nephrogenic Systemic Fibrosis?

Nephrogenic Systemic Fibrosis is a disease that occurs primarily in patients already suffering from kidney disease, who are then exposed to gadolinium-based contrast agents during MRI scans. This disease involves the tightening and hardening of the skin, but can also lead to contractures and difficulty in movement.

What is Nephrogenic Fibrosing Dermopathy?

Nephrogenic Fibrosing Dermopathy is another name for Nephrogenic Systemic Fibrosis, but refers primarily to the effects of this disease on the skin.

What are Gadolinium Contrast Dyes?

Gadolinium contrast dyes are gadolinium-containing agents that are used in MRI scans to help the image show up more clearly. This is done by the gadolinium altering its behavior within the magnetic field of the MRI scan.

Who Manufactures These Gadolinium-based Contrast Dyes?

There are currently five gadolinium-based contrast dyes that are approved by the FDA in the United States and they are manufactured by GE Healthcare, Bayer Healthcare, Tyco Healthcare (Covidien), and Bracco Diagnostics.

Who Gets Nephrogenic Systemic Fibrosis?

Nephrogenic Systemic Fibrosis has so far only been found in patients with moderate to severe kidney disease, and there also seems to be a strong link with gadolinium-based contrast dyes, though this has not been confirmed as a cause and effect link.

What is Magnetic Resonance Imaging (MRI)?

Magnetic resonance imaging is a diagnostic technique used to show up different organs being investigated. It uses magnetic fields and the reaction of substances within these magnetic fields to get a clearer picture of what is happening within the body.

What are the Symptoms of Nephrogenic Systemic Fibrosis?

Nephrogenic Systemic Fibrosis involves a tightening, hardening, and discoloration of the skin. The skin either becomes redder or darker and may develop plaques, a “woody” feel and orange-peel texture. As the disease advances, the hardening and tightening of the skin may also lead to contractures which make movement difficult. Patients also often complain of a feeling of muscle weakness.

How is Nephrogenic Systemic Fibrosis Treated?

As of today, there is no treatment for Nephrogenic Systemic Fibrosis that gives consistently effective results. But, the best treatment appears to be to improve renal functioning, dialysis, or renal transplants.

What’s the Risk of Getting Nephrogenic Systemic Fibrosis?

The risk for getting Nephrogenic Systemic Fibrosis in the total population is very small. Firstly, it has only been found in patients with moderate to end-stage renal disease which narrows down the overall population at risk of this disease. However, a small population-based study on patients with end-stage renal disease exposed to gadolinium based dyes showed a 2.4% risk of contracting NSF for this population.

Is Gadolinium Still Being Used?

Yes, gadolinium is still being used and for many people this appears to be perfectly safe. Warnings have however been issued by the FDA and they have requested box warnings for all gadolinium based contrast dyes to indicate their possible danger to kidney patients.

Are There Current Lawsuits Related to NSF?

Yes, there are a number of lawsuits that relate to Nephrogenic Systemic Fibrosis that have come forward.

 

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Have you been diagnosed with NSF (Nephrogenic Systemic Fibrosis) or NFD (Nephrogenic Fibrosing Dermopathy)? Yes No
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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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