DeCarli is also focused on victims who already have NSF/NFD by ensuring they get diagnoses and subsequent treatment for this horrific illness.
"A lot of people are unaware of this disease," says DeCarli. "As well, many doctors don't recognize it and don't do a biopsy that is necessary to make the diagnosis." However, DeCarli says there has been an increase in the last 18 months on continuing education programs for the medical community that addresses NSF. Still, she believes NSF is a widely underreported disease for several reasons.
"People on dialysis have problems anyway and people who get MRIs already have health issues," DeCarli explains. "As well, I am finding that a lot of people in their 40s or 50s who see a doctor for leathery skin and joint pain [classic symptoms of NSF] and the doctor attributes their problems to simply growing old. Quite often, they are misdiagnosed with rheumatism or arthritis: in fact, one of the foremost NSF experts in the country is a rheumatologist."
Patients may not be aware of NSF/NFD symptoms. "This is a systemic disease, meaning it causes fibrosis of the skin, muscles and internal organs," says DeCarli. "It often appears first at the ankles, spreading to the feet and up the legs; or it starts at the wrists, spreading to the hands and forearms. NSF appears bilaterally, i.e., almost always on both sides of the body. The skin thickens and becomes tight and hard. When it thickens around the joints such as the knees and hands, the joints contract and become completely inflexible—the joints cannot be straightened. Other symptoms include yellow papules on the eyes; muscle pain and weakness; and deep hip or rib pain.
A major problem is that the only known way to diagnose this disease is through a deep-tissue skin biopsy from an affected skin area, so if someone is experiencing some symptoms but not skin symptoms, there is not a diagnostic tool available--that I am aware of--to confirm NSF.
"I do know that NSF is an incurable disease, there is no known cure. However, there are a few experimental treatments that have had varying degrees of success. One is extracorporeal photopheresis (ECP) and the other is Gleevec. ECP is a process similar to dialysis--where the blood is cleansed. The treatment is extremely costly and rarely covered by health insurance and you have to be at the facility-- usually at large research hospitals-- for several hours, a few times per month. Gleevec is used to treat cancer and there have been a few clinical trials around the country testing this drug on patients with NSF, with some degree of success. It is also expensive.
MRIs, MRAs and Gadolinium-based Contrast Agents
"MRIs and MRAs are done with and without contrast—it is a medical decision that has to be made by the doctor and the radiologist. However, The FDA warning says everyone should be screened for renal dysfunction by history and/or a lab test before undergoing an MRI.
Before getting a MRI or MRA, an individual could question whether that extra diagnostic tool (gadolinium-based contrast agent) is significant enough to overcome the risk of developing NSF.
And a patient should make sure they are getting the right dose for their weight: Frequently with MRAs, the dosage is usually tripled to quadrupled. The new warning says repeated or higher than recommended doses increase the risk of NSF.
READ MORE MRI HEALTH RISKS LEGAL NEWS
It has gotten to be a cliché but lawyers are saying NSF is the worst disease they have ever seen.
Most people with NSF are faced with the prospect of watching the fibrosis grow and cover their entire body until they are completely immobile and know they are facing death. (Folks on dialysis frequently discuss whether they should stop treatment…)
I have seen several individuals suffering from this disease. Because this is a systemic disease, we cannot see what is happening on the inside, how it is affecting the organs. These people are in extreme pain and can barely get in or out of their car; on every trip to the hospital, family members wonder: is this the last ride? "