We sometimes come across articles and information on Raynaud’s that are enough to scare sufferers into an anxiety attack because they lead them to believe that they will be on medication for the rest of their lives and likely lose fingers or toes to gangrene. Guess the publishers think it will help sell more magazines!
While we’re always glad to see the media pay attention and help build awareness for Raynaud’s, this isn’t a wise or accurate approach, as less than 10% of sufferers have severe symptoms associated with more serious autoimmune diseases, and only a small portion of these patients will have extreme issues involving the loss of digits.
It’s truly not the norm for Raynaud’s. Most sufferers can improve their symptoms through lifestyle changes and avoidance techniques and not require medications. Raynaud’s can be uncomfortable and inconvenient, but it’s generally not life or limb threatening.
The latest is an article titled “I thought I was just cold. Now I face amputation” published by an Australian online magazine called Whimn Body + Soul. Then it was paraphrased in the most recent issue of Scleroderma News. OK, most Frosties with scleroderma do have severe Raynaud’s issues, so it’s a more relevant audience. But when an article like this shows up as mainstream in Google Alerts for Raynaud’s, it really is upsetting.
We’ve been contacted by Frosties with primary Raynaud’s in the past who have been to scleroderma chapter meetings or read information where sufferers are reported to have lost digits. They’ve gotten so upset thinking that they will also lose fingers or toes that they couldn’t get warm from the stress (which works to trigger attacks). We literally had to calm them down over the phone.
So if you come across this type of information, or should be at an event or among severe sufferers who have experienced amputations or gangrene, please know that this is a totally extreme outcome of Raynaud’s. The large majority of sufferers will never face these issues. Take a deep breath, close your eyes, and be grateful that this is not a likely outcome for you.