We’re planning to launch our first email version of Cold Cuts with this issue.  Members who’ve supplied their email addresses in the past year will be our first recipients.  The printed version will still remain available for those who prefer it, but we’re hoping to migrate most of our circulation to email over the course of this year, and are hoping it will allow us to publish more frequent newsletters.   

Please share your feedback on the the new email format and any other suggestions you have on Cold Cuts.

Even in the summer when it’s 70 to 80 degrees, I am wearing jeans, a t-shirt, socks and shoes and even my hoodie.  I cannot even carry a gallon of milk to the checkstand without my fingers turning white.  I stumbled across this website because I have a research paper I am doing on Raynaud’s for my anatomy class.  I am looking into new cures or treatments for Raynaud’s and seemed to of found a place to call my own!

Sincerely,

E. P.
Washington

I have suffered from Raynaud’s for several years but as I have aged the symptoms have increased and have made life a little less enjoyable especially during our cold Midwest winters.   

My doctor tried calcium blockers that gave me only minimum relief but I had to stop taking it due to a problem with low blood pressure.  I read on the Mayo website about some success with nitroglycerin cream.  I took the study results to my doctor and he said there wouldn’t be any harm in trying.  Let me tell you the results are fantastic.  One application to the backs of my hands in the morning gives me almost total relief for about 8 hours. The only side effect I have experienced is a temporary slight headache.  It has improved my life immensely.  I no longer have the stinging pain, horrible blue and purple fingers.  

I hope other sufferers can have some of the same success I have experienced from using the nitroglycerin cream.

Sincerely,

C.R.
Nebraska

P.S.  I am looking at my fingers right now and they look normal.  I feel like I won the lottery.

Editor’s Note:  The Raynaud’s Association does not endorse the drugs, treatments or products reported and advertised on this web site. Each patient’s needs and experiences may vary. Member tips and product reviews are not clinically-based reports.  So please review all treatment options with your doctor and use caution in exploring new
products.

Lundbeck has created a “Raise Your Hand” symbol that can be posted on websites and, for each click on this icon, Lundbeck will donate $1—up to a total of $10,000—to NORD’s general research fund. The Raise Your Hand campaign is intended to raise awareness of the need for more research on rare diseases, which is a major theme of Rare Disease Day 2010.   

You can support this campaign by posting the symbol, by sharing it with friends…and, of course, by clicking on it!    Please spread the word and encourage your friends and family to do the same.

Rare Disease Day is an annual event observed worldwide on the last day of February each year.   The purpose of this day is to raise awareness of rare diseases as a public health issue. 

In the U.S., a rare disease is defined as affecting fewer than 200,000 people.  There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.

The population of Raynaud’s sufferers is too large to be considered a rare disease:  As a group, we’re as large as all patients sufferering from rare diseases combined.  But a portion of Raynaud’s patients also suffer from rare diseases such as Scleroderma and Sjögren’s Syndrome.   More importantly, Raynaud’s sufferers share a common experience with these medical groups:  We struggle to get a proper diagnosis, find information, and get treatment.   Big as we are as a group, just like those with rare diseases, our cause receives little medical research attention. 

For 2010, the focus of Rare Disease Day is on the unique partnership between patients and researchers seeking to develop new diagnostics and treatments.  We join with our partners around the world seeking answers that will help those of us with little known, and less researched diseases gain the attention we deserve.

What can you do to make an impact?  Send a Letter to the Editor of your local paper, write your Governor, or send in your story to the Rare Disease Day Team at rarediseaseday@rarediseases.org.  For sample letters or to learn more go to the Rare Disease Day Web Site.

This is an educational and family fun event to help raise vital funds to support the Foundation’s research and education programs.  Click the link for more information:   2010 Walkabout Flyer

We’re looking for Raynaud’s sufferers who specifically have problems with cold feet to help us test a new line of socks. 

If you’re interested, please contact us.  Include your name, mailing address and shoe size.   We’ll appreciate your help!

GoodShop.com is a gateway to over 100 great stores including Target, Macy’s, The Gap, Best Buy, Nordstrom, PetSmart, Staples and Wal-Mart.  When you start your shopping at www.goodshop.com each of these major stores share a percentage of every dollar you spend with the Raynaud’s Association.  So before you redeem those holiday gift cards for a new book, computer, DVD, pair of shoes or clothing, go to GoodShop first.

Just go to www.goodshop.com, designate us as the cause you support and then click over to your favorite store.  You pay nothing extra – and you can even save money as GoodShop lists thousands of money-saving coupons and free shipping offers.  Or, add their toolbar to your browser at www.goodsearch.com/toolbar - and your purchases will count even if you forget to go to GoodShop first!  There’s no easier way to support Raynaud’s all year round.  So do a good deed as you shop and please spread the word.

Together we can continue to work towards beating Raynaud’s.  Please keep the generous spirit of the holidays alive.  Donate now!