Rare Disease Day was established in 2008 to raise awareness about rare diseases, which together impact millions of people worldwide. While the Raynaud’s population is too large to be considered in this category, many among us with secondary Raynaud’s suffer from these rare medical conditions. [Read more...]
Raynaud’s Phenomenon: More Common Than You Think
By Laurie Saloman
“…understand that Raynaud’s disease is far from rare. Estimates are that anywhere from five to 10 percent of people have it, with women nine times more likely to be affected than men. The peak age for diagnosis is between 15 and 30 years old. In fact, some experts estimate that up to one-fifth of all women of childbearing age have Raynaud’s…”
Read the full article: http://is.gd/XJRezP
By: BRUCE JANCIN
Internal Medicine News Digital Network
Persistent pain and nonreversible digital discoloration in a patient with Raynaud’s phenomenon are indicators of critical ischemia constituting a medical emergency.
“Raynaud’s patients will often say, ‘My fingers are uncomfortable. I feel pins and needles.’ But when they say it actually hurts, you’re in trouble. Particularly if they say, ‘It hurts beyond my finger, it hurts in the palm of my hand and radiates up in my arm, I have to hang my hand off the edge of the bed to get relief, it’s worse at nighttime,’ then you’ve reached the point of critical ischemia and if you don’t react you’re going to have big trouble,” Dr. Fredrick M. Wigley said at a symposium sponsored by the American College of Rheumatology. [Read more...]
I have had Raynaud’s for as long as I can remember. As a child, when my friends and I would go out sledding, I would always be the first one to get cold and want to go home. No matter what kind or how many gloves, socks and boots I wore, my fingers and toes would turn white and go numb. I just figured I wasn’t as tough as my friends. So, I would end up staying out with them, until my fingers and toes were numb, white, and extremely painful. It never occurred to me that it might be a condition. But then again I was just a little girl… [Read more...]
One of our Fans on Facebook shared with us the story of Alison Levine, diagnosed with Wolff-Parkinson-White Syndrome at age 17 and Raynaud’s in her early 20′s. Despite these disorders, she become team captain of the first American Women’s Everest Expedition.
She has ascended the highest peaks on every continent and also skied to both the North and South Poles. In 2010 at age 44, she completed the Adventure Grand Slam by reaching the summit of Mt. Everest, having fallen only 200 feet short in her previous attempt in 2002. Today she’s an inspirational speaker, and certainly an inspiration to us Frosties!
Here’s a video with clips from some of her speaking engagements:
Raynaud’s of the nipple most commonly occurs in pregnant or breastfeeding mothers, but can also occur in women who have never been pregnant. Like Raynaud’s in other parts of the body, it is a condition that can usually be managed and, when triggers can be avoided, the vasospasm events will reduce or stop.
Women who have Raynaud’s of the fingers and toes may develop Raynaud’s of the nipple when they become pregnant or start to breastfeed. This does not happen to all women with Raynaud’s in other body parts, but these women should be aware of this condition, and should take precautionary measures where possible. [Read more...]
I have not had a single attack since I started on time release nitroglycerin tablets. Before that? The queen of the rainbow.
My first noticeable issue with Raynaud’s was in the early 80’s and my doctors kept telling me I must have frozen my feet and fingers. I’ve lived on niacin for years being the mainstay. My plan is not to let an attack continue over 30 minutes due to damage that could happen (and has). So a winter walk meant fast-acting niacin in my pocket, besides all the other 9-1-1 things to do.
When I was a teenager my parents and I noticed how sensitive my fingers were to the cold. One day my mother got nervous I was going to lose my fingers because they all turned white and I told her they went numb on me.
She had me go to the doctor who did some tests. I remember he had me put my hands in ice water for about 5 minutes and then he examined them. That was not fun. He determined I had Raynaud’s. [Read more...]
The Raynaud’s Association needs your help! We have an opportunity to win the $5,000 prize that GuideStar USA, Inc., the leading source of nonprofit information, and KIMBIA, a group that empowers nonprofits and other organizations to increase giving, are making available through their Winter 2011 GuideStar-KIMBIA Nonprofit Giveaway. Anyone with firsthand knowledge about us who is not a paid employee of the Raynaud’s Association—donors, volunteers, board members, Forum members, any recipients of our services—can write a review about us on GuideStar at http://is.gd/0UW1NT.
The funds will go a long way in helping us spread the word about Raynaud’s and in providing assistance to the Raynaud’s community. We’ll really appreciate your support. If we win the $5,000, we all win!