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In This Issue
World Scleroderma Day
Webinar Series
Pulmonary Hypertension Screening
Cure Crew Update
Caregivers
Your Voice Matters!
Quick Links



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Insights eNewsletter
FOR THE SCLERODERMA COMMUNITY 
Tomorrow is World Scleroderma Day
   

How will you spread the word? Here are a few ideas others have come up with: 

  • Wear a scleroderma awareness bracelet and give one to a friend.
  • Ask a stranger if they have heard of scleroderma and share what you know - mentioning, of course, that's it's World Scleroderma Day. 
  • Draft a short post or share our new video on Facebook, Twitter and other social media outlets to raise awareness and encourage others to get involved.
  • Host (or have the kids host) a good old fashioned lemonade stand! Include posters about scleroderma and a sign about how the proceeds will help find a cure.
SRF Webinar Series
 
The next webinar in our popular series is scheduled for July 12, 2013 at 10:30 AM PDT with Dr. Lorinda Chung at the Stanford University Scleroderma Center as she discusses skin manifestations in scleroderma. Register here.  

 

Then, join us on September 17, 2013 at 10:00 AM PDT as Dr. Laura Hummers of the Johns Hopkins Scleroderma Center will share what is new in the world of scleroderma. Register here.  

 

The SRF webinar series is made possible by generous grants from Novartis, Gilead Sciences and MedImmune. All previous webinars are available for free download on the SRF website.
Annual Pulmonary Hypertension Screening Recommended for Systemic Sclerosis

  

From the 2013 EULAR Congress - Patients with systemic sclerosis should undergo annual screening for pulmonary arterial hypertension using a combination of transthoracic echocardiography and pulmonary function tests, an international expert panel said.  

 

These are the first evidence- and consensus-based recommendations for pulmonary arterial hypertension (PAH) screening in patients with systemic sclerosis, and the panel also called for screening patients with mixed or other connective tissue diseases with scleroderma features. "Our hope is that these recommendations will lead to earlier detection of PAH in connective tissue diseases and improve patient outcomes," Dr. Dinesh Khanna said while presenting the screening recommendations at the annual European Congress of Rheumatology. Read more... 

 

Visit our site to read more news for patients.  

Cure Crew Update

Garage Sale  

The SRF thanks Cure Crew member Roberta Hunter and her family for hosting another successful yard sale in Manville, Rhode Island to raise both funds and awareness for scleroderma. This was their fifth year hosting a community sale and the idea has inspired others across America to replicate their success. In total, the Hunter family has raised more than $17,900 to help fund research while helping friends and neighbors to clear out space and having a great time in the process. Including sales and online donations in her honor, Roberta is just $75 shy of reaching her 2013 Yard Sale goal of $2,000! Help her get there by making a donation on her Cure Crew page.

 

Pogo Superstar On July 27, Cure Crew member James Roumeliotis will attempt to break the Guinness World Record for the most pogo bounces without a single break (currently 70,076 set by William Hanrahan of Waterford, Connecticut in 1976). The event will take place in New York City as part of the 10th Annual Pogopalooza. Support James by making a donation on his Cure Crew page and read more about his sensational stunt for scleroderma research.

Caregivers: Two-Fifths Of U.S. Adults Care For Sick, Elderly Relatives
 
Four in 10 U.S. adults are now caring for a sick or elderly family member as more people develop chronic illnesses and the population ages, a new study has found.

"More health care is happening at home," said Susannah Fox, associate director of the Pew Research Center's Internet and American Life project and the study's lead author. "As more people are able to be saved by medical advances, their lives are being extended, but they're also being sent home medically fragile. It's caregivers who are the first line of defense. Read more... 
Speak Up! Your Voice Matters.

Last month we invited you to test your Raynaud's phenomenon (RP) knowledge and provide feedback on future webinar topics. Thank you for your participation. These are the answers to last month's quiz:

 

Which of the following are needed to make a diagnosis of RP?

  • Answer - All of the above was the correct answer. An RP diagnosis requires fingers to be unusually sensitive and change color when exposed to cold. 

What is mostly likely to cause an RP attack?

  • Answer - While stress can be a cause for an RP attack, it is most often a reaction to cold temperatures.  

Secondary Raynaud's differs from Primary if what disease is present?

  • Answer - There are many diseases that often include RP as a symptom: carpel tunnel, scleroderma, lupus, thyroid gland disorders and others.

Can smoking cause Raynaud's?

  • Answer - Yes. Smoking can cause RP and make attacks more frequent.

Does gender put you more at risk?

  • Answer - Yes. As is the case with scleroderma, women are at greater risk to be diagnosed with RP.

What type of medications are prescribed for RP?

  • Answer - All of the above was the correct answer.

o    Calcium channel blockers relax and open up small blood vessels in your hands and feet. These drugs can also help heal skin ulcers on your fingers or toes.

o    Alpha blockers provide relief for some patients because they counteract the actions of norepinephrine, a hormone that constricts blood vessels.

o    Vasodilators relax blood vessels - such as nitroglycerin cream on fingers to help heal skin ulcers. Your doctor may also prescribe vasodilator drugs that are commonly used to treat other conditions.

  

If you have RP, what type of medications may your doctor suggest you avoid?

  • Answer - Again, all of the above was the correct answer.

o    Certain over-the-counter cold drugs that contain pseudoephedrine (Chlor-Trimeton, Sudafed).

o    Beta blockers. This class of drugs, used to treat high blood pressure and heart disease, includes metoprolol (Lopressor, Toprol XL), nadolol (Corgard) and propranolol (Inderal, Innopran XL).

o    Birth control pills. If you use birth control pills, you may wish to switch to another method of contraception because these drugs affect your circulation and may make you more prone to attacks.

 
FUTURE WEBINARS:

Thank you for your feedback regarding future webinar topics. Your answers provided us with a wide variety of subjects and we look forward to having you join us for our upcoming sessions that will include your suggestions of the different types of scleroderma, scleroderma-related muscle loss and pain, how to organize a scleroderma awareness event and others. Visit our site to view past webinars and register for upcoming sessions.

 

This month: We understand that with scleroderma comes a variety of lifestyle changes. With the Fourth of July holiday coming up and summer BBQ season in full swing, please share with us if/how scleroderma has changed your diet or eating habits. As an example, what dietary restrictions have you endured and how have you creatively maneuvered the challenge?  Click on this month's survey to tell us more on this topic. We'll share some of your answers next month.  

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