Raynaud’s phenomenon is one of the most common medical disorders —more prevalent than multiple sclerosis, Parkinson’s disease and leukemia combined — yet most people don’t even know their pain has a name.
October is Raynaud’s Awareness Month. “An estimated 15-30 million Americans have Raynaud’s but only one in 10 seeks treatment,” according to Lynn Wunderman, founder and chair of the Raynaud’s Association, the national 501(c)3 nonprofit group.
Raynaud’s phenomenon (aka Raynaud’s disease or syndrome) is far from rare. The condition is characterized by numbness, throbbing and pain in fingers, toes and other extremities when a person is exposed to cold or feels stressed. In a typical case, fingers turn white, blue or red as the small blood vessels go into spasm within minutes of exposure.
“People who have it often brush it off, thinking it’s ‘just poor circulation’ or something everyone experiences,” Wunderman says. “It’s difficult to diagnose because there’s no formal test to determine if a patient has Raynaud’s. Even when discovered, some doctors don’t take it seriously, but throbbing pain and color changes on the fingers and toes are not normal.”
Raynaud’s may be a signal that a more serious medical issue is involved, which is why seeking medical treatment is important for ruling out other causes. For people with systemic scleroderma, lupus and other autoimmune diseases, Raynaud’s is often the first sign something is wrong. The Raynaud’s Association points out that 90% of Raynaud’s sufferers have the primary form of Raynaud’s with nothing more serious as the culprit. The cause in these cases is unknown.
The Cold Facts on Raynaud’s Guide
Common Raynaud’s Symptoms
A number of medications on the market may help, but there are no FDA-approved drugs specifically for Raynaud’s — as yet. “We are hopeful that some current clinical trials may soon result in a breakthrough drug,” Wunderman says.
The primary reason that Raynaud’s does not have the media exposure of well recognized diseases is because public awareness campaigns are very expensive, and producers of “off label” drugs used to treat the condition are prohibited from funding Raynaud’s education programs. “That’s been a huge impediment for raising the funds needed to spread awareness,” Wunderman points out.
The Raynaud’s Association relies exclusively on donations from the public, grants from small foundations, and sponsorships from companies that make warming products such as gloves and heat packs. All the Association’s board members are volunteers that have the disease.
Although there’s no cure yet, the Raynaud’s Association offers sufferers support, strategies and product suggestions to live more comfortably during the colder months.