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In This Issue
How Serious Is Raynaud's Phenomenon?
Love in the Time of Chronic Illness
Cure Crew
6 Things About Chronic Pain
Rare Disease Day
Quick Links



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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 
How Serious Is Raynaud's Phenomenon?

With the polar vortex striking many across the country, we thought this a good time to share this article from our archives.  

 

Millions of people, more women than men, suffer from a feeling of extreme coldness in the fingers and toes, a problem called Raynaud's phenomenon. For some, the discomfort extends into the summer months, and even holding a cold drink or being in an air conditioned room can be unbearable. Here, Dr. Fredrick Wigley of Johns Hopkins Medical School responds to readers concerned about whether they have Raynaud's, how serious it might be and what can be done to ease the discomfort. For more information, see Dr. Wigley's earlier responses in "Ask the Expert: Raynaud's Phenomenon" and The Times Health Guide:  

  

When Is It Raynaud's?

Q. I have always been curious about whether I have this condition. I have basically every symptom except the hallmark one - I don't tend to get differential coloration in my fingers, though sometimes I do feel like some of them have "turned off" and gotten cold while the others are fine. If there are no blue fingers or white fingers but they are manifesting most of the other symptoms, is this Raynaud's? Read more... 
Love in the Time of Chronic Illness 
When should you disclose medical conditions to a date? When is illness too much for a relationship to survive?

"Don't even tempt me."

That was Ashley Pierce's response when her friend Tammi tried to set her up with Walter. Having spent a good portion of the last 10 years in a Las Vegas hospital bed, Pierce didn't even want to entertain the thought of dating.

Besides, if he was anything like other guys she had pursued, she didn't think he'd be able to handle it. He'd back out. Four years later, they are engaged. He never backed out.

"I never thought someone would marry me with my conditions," 26-year-old Pierce recently wrote in a Facebook status.

Her conditions? Crohn's Disease and ulcerative colitis-chronic inflammatory conditions that affect the gastrointestinal and digestive tracts and include complications ranging from abdominal cramps to malnutrition. Read more... 
Cure Crew - It's More Than a Team 
 

This Valentine's Day, the SRF would like to thank our dedicated and growing team of Cure Crew Members over the world for helping to raise funds and awareness for scleroderma research.

 

When the SRF first dreamed up the idea of the "Crew," we had visions of patients and family members hosting small events to raise scleroderma awareness in their local communities. It has become much more...

 

Cure Crew Members have not only hosted exciting events, both large and small, they've also been able to use their creativity to make online giving easy for friends and family. Just by crafting a simple email about scleroderma and the need for more research--and including a link to their personal Cure Crew page, Crew Members have created email and social media campaigns that spread like wildfire -- raising more money for research and introducing thousands of new people to scleroderma and the work of the SRF. 

 

To all our Crew Members, thank you! We appreciate your dedication and are proud to have you on our team. Join Cure Crew or learn more...

6 Things About Chronic Pain You Didn't Know You Knew 
 

Chronic pain isn't just constant pain, though that would be more than enough for anyone to handle, the truth is chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by "healthy" people.  Remembering that like all bullies chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

 

Pain is exhausting.  We have all had a bad headache, a twisted knee, or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail.  You may not have consciously realized it, but the pain that has relentlessly nagged you throughout the day has drained you as bad as any flu.  Even when you try to ignore pain it will stay in the back of your mind, screaming for attention, draining away all of your energy. With chronic pain this is amplified because it isn't just one day, it is months or even years of struggling to live with this very demanding monkey on your back.  I'm tired just thinking about it. Read more...

 

Living With a Rare Disease?
 

What actually qualifies something as a rare disease? In the U.S., a rare disease is one that affects fewer than 200,000 people. There are more than 6,800 rare diseases, which affect 25 million to 30 million Americans, according to the Office of Rare Diseases Research, a part of the National Institutes of Health.

 

Some examples of rare diseases include Cystic Fibrosis and Huntington disease. An iReport about another rare disease, Stiff Person Syndrome, was the inspiration for this assignment.   

 

 You can share your personal story here. 

Rare Disease Day

 

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and by National Alliances and Patient Organizations at the national level.  

 

The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Learn more... 

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