Medical misdiagnoses may be a lot more common than many patients realize. According to a household survey commissioned by the National Patient Safety Foundation, of people who reported experiencing a medical error, 40 percent said the error was a misdiagnosis.
Dermatologists may unknowingly be contributing to that statistic, as some skin ailments may exhibit symptoms similar to a rare form of lymphoma called cutaneous T-cell lymphoma, or CTCL.
CTCL is estimated to affect 16,000 to 20,000 people across the U.S. and approximately 2,500 to 3,000 new patients are diagnosed every year. It can cause visible skin symptoms as mild as a small rash or as severe as tumors, extensive redness, peeling, burning, soreness and itchiness all over the body.
The illness can be hard to detect and diagnose, as it shares the same symptoms as other more common skin diseases. The scaly, itchy, red patches of CTCL are often mistaken by doctors as eczema or psoriasis. Many patients are misdiagnosed and treated unsuccessfully for other disorders before receiving a correct diagnosis. In fact, it takes an average of seven years for patients to receive a correct diagnosis.
“By the time patients are diagnosed with CTCL, they are often exhibiting visible and debilitating skin symptoms that impact daily activities that most of us take for granted,” says Dr. Francine Foss of Yale University. “Fortunately, treatment options like extracorporeal photopheresis exist, which can be a helpful treatment option for these patients.”
First discovered in 1987, extracorporeal photopheresis (ECP) was the first regulatory approved treatment for CTCL. ECP therapy offers an effective alternative for patients unresponsive to other forms of treatment. Most CTCL treatments often suppress the immune system of these already-ill patients; they can also cause harsh side effects that contribute to the debilitating nature of these diseases.
By comparison, ECP therapy helps to restore the body’s natural ability to maintain a balanced immune system by regulating the activity of overactive immune cells, involving the intravenous collection of white blood cells that are then treated with ECP and re-infused into the body. And patients may stay on the treatment for an extended period of time and have shown no increased risk of opportunistic infections, relapse, or development of secondary malignancies.
In the U.S., Therakos currently markets the only approved integrated systems for ECP, which can result in outcomes such as decreased itching and redness, as well as noticeable or complete clearing of the skin. If you’re affected by CTCL, talk to your doctor about whether this treatment option may be right for you.
To read about the experiences of patients, caregivers and health care professionals impacted by CTCL and using ECP as a treatment method, visit www.lightinguplives.com.