What causes NSF/NFD

NSF/NFD is caused by gadolinium-based contrast agents used in MRI’s (magnetic resonance imaging). At this point, it has only been confirmed in people with kidney disease, although there have been some unconfirmed reports of people with healthy kidneys suffering from NSF/NFD.

If you have kidney disease or impaired renal function, you should avoid tests using gadolinium-based contrast agents if at all possible.

What is NSF/NFD?

NSF/NFD starts with thickening and tightening of the skin. Tightening and contracture around the joints can become so severe that it becomes impossible to move your legs, feet, hands, and arms. The ability to perform everyday tasks is lost and you may be confined to a wheelchair or even become completely bedridden.

The prospect of becoming completely immobile externally is bad enough, but it isn’t the full extent of the danger. The tightening can actually constrict airways and internal organs, and kill you.

The scarring can also move into your internal organs. Your heart, lungs, and/or diaphragm, can become so severely scarred that they stop working, also resulting in death.

Symptoms and early detection

NSF/NFD is very rare. Most doctors don’t even know to watch out for it, and aren’t aware of the risk posed by gadolinium based contrast agents and MRI.

If you have had an MRI and start experiencing symptoms of NSF/NFD, you must seek immediate medical attention and get tested for the disease.

Early detection is your best hope for survival, for stopping the progression, and the possibility of reversing the symptoms.

The symptoms can take days, weeks, or months to appear. They include:

• Skin which feels “woody” and has a texture similar to that of an orange peel

• Red or dark patches of skin

• Tightening and swelling of the skin, typically starting with the legs, moving to the arms, and sometimes the trunk

• Thickening of the skin around the joints, restricting movement

• Burning, itching, and/or sharp pains in affected areas

• Fluctuating hypertension preceding the appearance of skin lesions

• Symmetrical skin lesions, commonly on the ankles and thighs and between the wrists and upper arms

• Muscle weakness

• Deep bone pain in the hips and ribs

• Calcification of soft tissues

• Yellow plaques near the eyes

Treatment

NSF/NFD was discovered in 1997. So far, none of the treatments being tried are consistently effective.

The first and best approach is to improve renal function. This can halt the progression of NSF/NFD and, for some people, reverse the symptoms. It can mean having a kidney transplant.

Physical therapy is recommended for anyone with NSF/NFD. The effectiveness varies, but it can maximize mobility and has no dangerous side effects.

Other treatments are being explored. Most have dangerous side effects and are only helpful for some people.

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