Our theme for this year’s Raynaud’s Awareness Month campaign is “Raynaud’s is Far From Rare.”
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. It’s a very widespread but little known medical disorder that affects 15 to 30 million people in the U.S.
Unfortunately only one in ten people living with Raynaud’s seeks treatment. They often brush it off as just “poor circulation” or something everyone experiences, so they don’t understand that lifestyle adjustments and medication options can make their lives warmer and more comfortable.
Part of the problem is that it’s difficult to diagnose because there’s no formal test to determine if a patient has Raynaud’s. And even when discovered, some doctors don’t take it seriously, telling patients to move to a warmer climate, or just wear gloves. They have no idea what it’s like to live with the disorder – the pain, swelling, numbness, and odd looks from others who wonder why their white or blue fingers look like those belonging to a zombie.
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 more serious autoimmune diseases, such as lupus, rheumatoid arthritis and scleroderma, Raynaud’s is often the first medical issue to surface. It can take years before additional symptoms complete the picture for patients with this secondary form of Raynaud’s, so it’s important to establish benchmark readings on the tests that are used to establish that a more serious primary disorder may be involved.
While Raynaud’s is far from rare, the primary reason it lacks the media exposure of more well-recognized diseases is because public awareness campaigns are very expensive, and such efforts are often funded by pharmaceutical companies whose drugs serve these populations. Raynaud’s is out of luck in obtaining such funding, as there are currently no FDA-approved drugs specifically for Raynaud’s. That means producers of “off label” drugs used to treat the condition are prohibited from funding Raynaud’s education programs. As a result, Raynaud’s awareness levels are no match for more familiar medical disorders, but the Raynaud’s Association continues to soldier on in its mission to build awareness and provide support for the Raynaud’s community.
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 those featured in the Product Showcase section of our website.
The organization has no paid staff, it is run by volunteer board members who all have the disease, so they truly understand what it’s like living with Raynaud’s and want to make the world a warmer, more comfortable place for fellow Frosties. All contributions to our cause are greatly appreciated!
Please help us spread the word this October by sharing the link to our press release and promoting our Raynaud’s Quiz to friends, family and colleagues who might also be among the 15 to 30 million people who can benefit from learning more about this little known medical condition.