We Need a Warm Helping Hand

Vertical Icon - with TypeA woman grew up cold much of the time as a child.  She didn’t understand why she couldn’t wear the strappy little dresses or cute sandals worn by her friends without being in pain.  As she grew into her mid-thirties, suddenly the pain in her feet on cold days was unbearable.  She would go barefoot around her office because shoes hurt her toes too badly.  And finally, on vacation in New Hampshire, she could barely walk from the pain when anything touched her toes. 

She went to the emergency room, but they had no idea what was wrong.  Arriving home to New York, her internist was unsupportive, telling her to go home and wear support hose because her problem was just poor circulation.  Putting her (cold) foot down, she told the doctor, “This isn’t normal, and I’m not leaving your office until either you tell me what’s wrong, or can send me to someone who will.” 

Sound familiar? 

This is the story of one woman’s experience being diagnosed with Raynaud’s phenomenon – in fact, it’s my story.  I’m sharing it with you because you understand the pain and frustration Raynaud’s represents for sufferers of this little known but widespread autoimmune condition. 

The Large Majority of Raynaud’s Sufferers Are Unaware That They Have a Medical Condition 

Just recognizing Raynaud’s is a big step, as there is no formal test to diagnose the disorder, and there are no FDA-approved drugs on the market specifically developed for the treatment of Raynaud’s. 

But more importantly, 80 percent of sufferers are unaware that their pain and discomfort has a medical explanation, so they live with being uncomfortably cold and don’t seek a doctor’s counsel or treatment.  That’s 80% of the over 15 million people estimated to be afflicted with Raynaud’s.  But they’re all too familiar with the pain: The fingers that turn white and blue when there’s a chill in the air, the toes that throb in agony when the Raynaud’s sufferer is standing in the cold.  The disease causes an interruption of blood flow to the fingers, toes, nose, and/or ears when a spasm occurs in the blood vessels of these areas.  Spasms are caused by exposure to cold or emotional stress – triggers that are difficult to remove from our everyday lives.

Building Raynaud’s Awareness is Our Biggest Challenge and Greatest Opportunity  

Awareness and medical attention are important not only to make a sufferer more comfortable, but also to prevent permanent blood vessel damage and to rule out more serious autoimmune diseases, such as scleroderma, lupus, rheumatoid arthritis and other rheumatic disorders.   

The Raynaud’s Association is a small organization with a big mission. In the past, our resources have been focused on support and education for the millions of Raynaud’s sufferers.  But the time has come to broaden our efforts and reach out to the large numbers of sufferers who need to know the source of their pain.  For that we need your help. 

With your help, we will launch the first multi-media radio, television, and digital media campaign to raise awareness of Raynaud’s.  The campaign will also include an educational video, blogger outreach, and national distribution of our recently-published 35-page Guide.  

If large numbers of sufferers seek treatment, the medical community will take more notice, resulting in the search for better treatment options, soliciting research dollars and prodding the drug companies to find a cure.  Simply learning that the reason for their discomfort associated with Raynaud’s is medically-induced, and that millions of other people also have this condition will give people the relief of knowing that they are not alone.    

Raynaud’s is painful and sometimes debilitating when hard-to-heal ulcers and infections occur.  The lack of awareness, however, is our biggest challenge. 

We Need a Warm Helping Hand 

Your donation is crucial.  Your funds will help us to expand our current grassroots awareness program into a force that reaches those who are yet undiagnosed, those who need support and treatment, and those who will help us give Raynaud’s disease the attention it warrants.   

Please donate now.  To use a credit card, click here or text SHIVERS to 88588, or send a check made out to the Raynaud’s Association and mail it to:

Raynaud’s Association
11 Topstone Road
Redding, CT
  06896

Your support can help enhance the lives of millions of sufferers.

 

1 Comment

  1. Editor’s note: The above statistic has been updated: As many as 90% of sufferers are unaware that they have a medical condition and seek treatment for Raynaud’s symptoms.

    That’s one reason why it’s really difficult to obtain accurate statistics on the Raynaud’s community. And it means that the Raynaud’s Association has much more work to do in building awareness of this widespread, but little recognized condition!

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