We came across a post by Dana Symons on her blog At the Water’s Edge about the process she went through discovering she suffers from Raynaud’s.
Like so many stories we hear and read about, Dana has experienced her fingers and toes turning white when exposed to cold as long as she can remember. Does this sound familiar: “I didn’t realize that this wasn’t normal until I was eighteen years old. I just thought that’s what happened when you got cold.”? How many of us grew up cold all of the time thinking it was normal, or that we just had poor circulation?
We shared a wonderful video in an earlier blog post about a woman who also experienced being cold most of her life, and grew up believing that “cold hurts.” It wasn’t until speaking with her husband at age 28 arguing this point that she realized other people don’t experience cold the way she does.
Dana’s story continues…in a restaurant her mother sees Dana’s fingers turning white wrapped round a glass of ice water and wants to rush her to the emergency room. They compromise on having her see a doctor. She describes her symptoms and is diagnosed with Raynaud’s.
Fast forward another year, and Dana begins having symptoms of rheumatoid arthritis. Over time, she put the two together and asked the question: “Was RA lying dormant for some years, and was Raynaud’s actually my first symptom or indicator of rheumatoid disease?” Ding, ding!!! Why didn’t her doctor run blood tests to determine if Dana had signs of another more serious primary disorder? Or refer her to a rheumatologist for these tests? Even if none showed up this early, she would have established benchmark readings for comparison at a later date.
This story just reinforces our mission: Of the millions of Raynaud’s sufferers today, 80% of them are not aware they have a medical condition. And the medical community is not sufficiently knowlegeable about Raynaud’s for proactive treatment. That’s why we’re here, and we hope you’ll help support our work because millions of Frosties need to know there’s a reason they associate pain with cold and scary color changes on their fingers and toes. We want to help make the world less painful and scary, and to ensure each sufferer that they are truly not alone!
This site is truly a blessing…you’ve helped me a lot!
This Site is Truly a Blessing!
I just found this Facebook page today and think it will be of great help.
by K.M. (Facebook Fan)
Facebook Page Great Help
I was so happy when I found your organization. Really appreciate all of your work!
By A.A. (CA)
So Happy When I Found You!
Thanks for the support, information, help, advice, and all things you do.
by S. M. (Spain)
Thanks for All the Things You Do
I wanted to take a moment to thank you for your efforts in creating an awareness program…People will normalize and dismiss any number of things in their lives, and creating awareness truly means a great deal in reaching these people…please continue the great work that you and your team are doing.
by V.K. (Canada)
Thank You for Creating Awareness
Thank you for the information and research that you do to try to bring relief to those of us who suffer from this syndrome…Keep up the good work. I look forward to being a part of this network.
by E.W. (NY)
Keep Up the Good Work
Thank you! The Association was THE resource after I was diagnosed!…enjoy your newsletters…always recommend your site to fellow sufferers and curious friends.
by A. M. (Facebook Fan)
THE Resource After I was Diagnosed!
Glad I found you! I live in Minnesota and I am really glad you test products that might help me. I’ll keep an eye on your web site this winter!
by C.G. (MN)
Glad I Found You!
…This site is great for information…I love this site and the people here I can share myself with.
by M.D. (Facebook Fan)
This Site is Great for Information
Great video. Many people, including family members, simply do not understand this condition.
by T. G. (Facebook Fan)