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What is Nephrogenic Systemic Fibrosis?
Nephrogenic Systemic Fibrosis, also known as Nephrogenic Fibrosing Dermophathy, is a medical condition that has been puzzling doctors and researchers for the past decade. The first case of Nephrogenic Systemic Fibrosis showed up in 1997, and to date, there is no know cure and no definite cause. Nephrogenic Systemic Fibrosis has been linked to kidney disease, but this skin condition isn’t predictable by any standard.
Nephrogenic Systemic Fibrosis is a condition that causes the skin to swell, thicken, and tighten, especially in the arms and legs. For many, Nephrogenic Systemic Fibrosis makes it painful or impossible to walk or do other activities requiring the movement of joints. Some patients experiencing Nephrogenic Systemic Fibrosis note sharp pain, deep pain, and burning, and the quick swelling and stretching often cases blisters, bruises, and lesions around the joints. There is no one treatment that works for every Nephrogenic Systemic Fibrosis patient.
Although no one is sure what causes Nephrogenic Systemic Fibrosis, it is linked to kidney disease. The FDA’s official statement (as can be reviewed at their website) states, “Patients with moderate to end-stage kidney disease who receive an MRI or MRA with a gadolinium-based contrast agent may get NSF/NFD which is debilitating and may cause death.” However, it is important to note that gadolinium doesn’t always cause Nephrogenic Systemic Fibrosis, and there is evidence that this isn’t the only trigger for the disease.
According to the International Center for Nephrogenic Fibrosing Dermopathy Research, “While there is no consistently successful treatment for NSF, improving renal function (due to any modality) seems to slow or arrest NSF (and in many cases allows for gradual reversal of the process over time)” You can read more at their website. In other words, the best treatment for this condition is to treat the kidney disease itself. However, some other treatment options that patients can explore, according to the ICBFDR, include the following:
- Oral steroids and other medications
- Topical (skin) treatment with Dovonex
- Extracorporeal photopheresis (ECP)
- Plasmapheresis
- Ultraviolet therapy
- Physical therapy and continuous activating
Because the skin disease is not common and treatment is sporadically received, prognosis is difficult. Some patients report that the condition clears up over time, especially with successful kidney disease treatment. At the same time, some doctors have reported death due to Nephrogenic Systemic Fibrosis. Until this condition is more thoroughly studied, the medical community will continue to be puzzled by Nephrogenic Systemic Fibrosis.
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