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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Sjogren's Acronym

 

describe the imageThis Sjögren's acronym was sent to the Foundation by a member's husband. He wrote this for his wife during Sjögren's awareness month in April and has allowed us to share it.

S- So dry – both my mouth and my eyes
j- Just feel miserable, much of the time
ö- Only others with Sjögren’s really understand what it’s like
g- Goggles, eye drops, gels, mints – I must’ve tried them all
r- Restasis – one magic medicine that can help
e- Every once in a while, a good day!
n- Never gonna’ give up, no matter how I feel
'
s- So tired, so sore, but tomorrow might be better!

Having positive support can be very important when living with a chronic illness. The Foundation encourages you to join a local support group, become a member of the Foundation or comment on blog posts and connect with others here.

 Is there something you'd like to share with the Foundation- email us at tms@sjogrens.org!

Get all the Vital Sjogren's Information on an Audio CD!

 

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Missed the 2013 National Patient Conference? Get all the vital information you need on an audio CD!

Five of our most popular talks from the 2013 National Patient Conference held in Bethesda, MD are available for purchase as audio CDs.  Each talk is 30-40 minutes long and comes with the handouts used by the presenter. Buy just the talks you want to hear or purchase the whole set!

 

Price:
$16 for Members
$30 for Non-members
Click here to learn about SSF membership!

Remember, if you order online you must sign in first to receive the Member discount. If you have any questions about your login information or want to order the CDs over the phone, please call the Foundation at 1-800-475-6473.

Top 5 Tips for Dry Nose and Sinuses

 
Patients with Sjögren’s frequently suffer from decreased mucus/nasal secretions and dryness of the nose and sinuses. Here are the Sjögren's Syndrome Foundation's top 5 tips for treating your Dry Nose & Sinuses:

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  1. Try a bedroom humidifier, which generally comes in two types. While more expensive, a self-sterilizing unit is ideal in that it continuously sterilizes and cleans the steam prior to admitting it into the air. A more modestly-priced humidifier is adequate but must be cleaned at least twice a week to limit the possibility of circulating fungus in the air. For a Sjögren's patient, an optimal range of humidity is between 55-60% regardless of the ambient temperature.

  2. Enjoy high humidity environments, such as a steam bath, although remember that hot and long baths can dry out the skin.

  3. Avoid medications that increase dryness when possible. Many medications used to treat the upper respiratory tract such as decongestants and antihistamines are drying. Many other medication classes also may contribute to nasal/ sinus drying. When in doubt, check with your physician!

  4. Consider using over-the-counter (OTC) emollients such as Ponaris® to cleanse the nose, particularly if large crusts and debris are present. Also, use OTC nasal drops and buffered saline sprays regularly (as often as every hour) to lubricate the nasal passages and nasopharyns. Additionally, OTC gels such as Rhinaris® and AYR® work like sprays but last longer and are recommended particularly at night prior to going to sleep.

  5. Discuss the prescription medications Salagen® and Evoxac® with your physician. These have been shown to help Sjogren's patients with dry mouth, and potential added benefits for dry nose, sinuses and nasopharynx should be considered.

Share with us below what tips you’ve found the most helpful when treating symptoms associated with dry nose and sinuses.

These Tips are from the SSF Patient Education Sheet: Dry Nose and Sinuses. Click here to view the full sheet

Click Here to see all of the SSF Patient Education Sheets

Venus Williams joins the Sjogren's Awareness Ambassador Program!

 
Venus Cover

The Sjögren’s Syndrome Foundation is excited to announce Venus Williams as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program. Venus’ courage to share her story makes her a great Awareness Ambassador and we are thrilled to have her leading the charge as our Chairperson,” said Steven Taylor, SSF CEO.

Awareness Ambassadors are on the front line for helping the Foundation achieve our 5-Year Breakthrough Goal! Our goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years,” will only e achieved by volunteers helping to educate their community and local medical professionals about Sjögren’s and its various manifestations.

Only when Sjögren’s is recognized as a serious disease will patients receive the care needed.  

“By becoming an Awareness Ambassador, you will be helping to increase awareness of Sjögren’s – a very important cause I have been working on since I was diagnosed in 2011.  Please join with me as we make a difference in how Sjögren’s is perceived in both the medical field and general public.” – Venus Williams

Help make a difference in your community and join Venus by becoming a Sjögren’s Awareness Ambassador!

 Click here to learn about becoming an Awareness Ambassador

Over four million Americans are estimated to have Sjögren's, yet fewer than one million have been diagnosed. Your voice will help us make Sjögren’s a household name! To learn more about becoming an Ambassador, please contact Kathy Ivory by phone at 800-475-6473, extension 213 or by email at kivory@sjogrens.org.

The SSF also wants to recognize The Carroll Petrie Foundation whose generous grant, supporting the Awareness Ambassador program, will allow us to provide the materials and support needed to increase awareness in communities across the United States.

Industry Watch

 

Evoxac® (cevimeline)

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Ranbaxy Pharmaceuticals, Inc. (RPI) has launched a generic version of cevimeline, the trade name for which is Evoxac®. The genericwill be marketed in the U.S. under an agreement with Daiichi Sankyo, Inc. RPI is based in Jacksonville, Florida. Cevimeline activates the M3 receptors of the parasympathetic nervous system and leads to increased saliva production. It was FDAapproved in January 2000 for dry mouth, which marked the second therapeutic that has been FDA-approved for a major complication of Sjögren’s.

Actemra® (tocilizumab)

Actemra® (tocilizumab) was approved in October 2012 by the FDA for use in rheumatoid arthritis and clinical trials will be launched in Sjoören’s this year. Actemra® is made by Genentech, a member of the Roche group. An interleukin-6 (IL-6) receptor inhibitor, the drug already was approved for use in systemic juvenile idiopathic arthritis. Jacques-Eric Gottenberg,
MD, of Strasbourg, France launched a study this year to investigate the efficacy of Actemra® in Sjögren’s patients.

Rituxan® (rituximab)

The most recent company to work on developing a generic version of Rituxan® (rituximab) has run into delays. The South Korean-based company Samsung Electronics has temporarily ceased clinical development of its biosimilar drug. Earlier, Teva Pharmaceutical of Israel also halted development of a biosimilar for the same blockbuster drug. While exact reasons were not provided in either case, experts are on record as saying that the development of a biosimilar appears to be a trickier prospect than expected. Loss of patent protections are looming in both Europe and the U.S. for Rituxan®, which is a B cell-targeted biologic (specifically a chimeric anti-CD20 monoclonal antibody) produced in partnership by Biogen Idec and Genentech/Roche. It is FDA-approved for use in non-Hodgkin’s lymphoma, RA and most recently for Wegener’s granulomatosis and is currently undergoing clinical trials in Sjögren’s.

 

***This was first printed in the Fall 2012 Sjögren's Quarterly, the SSF medical and scientific newsletter that is distributed free-of-charge to thousands of healthcare providers in rheumatology, ophthalmology, optometry, dentistry and research.

Click Here for an SQ sign up form that you can take to your doctor and make sure they're informed about the latest Sjögren's information!

March 30th is National Doctor's Day

 

This year, show your doctors your appreciation by helping them stay updated on the latest Sjögren's information!
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Purchase "The Sjögren's Book, Fourth Edition" for a physician (or physicians) in your life and the SSF will mail the book directly to them with a special card letting them know that it was purchased by you in honor of National Doctor's Day!

With this purchase, the SSF will give your physician a complimentary subscription to our professional newsletter, Sjögren's Quarterly, as well as brochures for their office.

With Sjögren's Awareness Month right around the corner in April, what
better way to show your doctor appreciation than informing their entire
staff about Sjögren's and raising awareness in your community!

Click Here for the SSF National Doctor's Day- I Appreciate My Doctor Order Form

Cost= $32.00

How to order:

  • Call 1-800-475-6473
  • Fax the form to 301-530-4415
  • Mail the form to the SSF Office: 6707 Democracy Blvd., STE 325 Bethesda, MD 20817


Our Top 5 Tips for Raynaud's Syndrome

 

Raynaud’s Syndrome occurs in approximately 15-30% of patients with Sjögren’s.

Raynaud’s Syndrome (sometimes called Raynaud’s phenomenon) is defined as repeated episodes of color changes in the fingers and/or toes with exposure to cold temperatures or during episodes of emotional stress. The color changes are due to a spasm of the blood vessels that feed the fingers and toes. The digits typically turn very white, then can take on a bluish color with prolonged exposure to the cold, and finally can turn very red as blood flow resumes.

Sjogren's Syndrome Foundation's Top 5 Tips to control your Raynaud's Syndrome:raynauds phenom

  1. If you have access to water when a flare starts, run warm water over your fingers and toes until skin color returns to normal.

  2. Do not smoke — this constricts the blood vessels that feed the hands and feet.

  3. Moisturize your hands and feet every day to prevent your skin from cracking.

  4. When your hands or feet start to feel cold, wiggle your fingers and toes, move your arms and legs around to get blood flowing, or put your hands under your armpits to warm them up.

  5. Talk to your doctor about your symptoms. Several medications can be used to help the vessels stay dilated, including a class of blood pressure medications called calcium channel blockers. Some medicines, such as beta blockers used for high blood pressure, may make Raynaud’s worse.

These Tips are from the SSF Patient Education Sheet: Raynaud's Syndrome- Click here to view the full sheet

Click Here to see all of the SSF Patient Education Sheets

  Click Here to Become an SSF Member

Shannon Boxx Steps Up for Sjogren's Awareness

 

The Sjögren's Syndrome Foundation is thrilled to welcome Shannon Boxx as the 2013 Honorary Walkabout Chairperson!

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Shannon Boxx, member of the U.S. National Women’s Soccer Team and Olympic gold medalist, has been an inspiring Sjögren’s advocate since she announced she has Sjögren’s this past year and was connected to the Foundation by Athletes for Hope.  Shannon is now taking Sjögren’s awareness to communities around the United States by stepping up as the SSF Honorary Walkabout Chairperson!

Click here to learn more about SSF Walkabouts and an event calendar

If there is already a Walkabout in your area and you would like to learn more about it or if you are motivated and want to start an event in your area- please contact Ben Basloe at 301-530-4420 x207 or by email at bbasloe@sjogrens.org to learn how you can get involved!

Want to learn more about Shannon's journey with Sjögren's? Listen to her interview with American Airlines and US Airways about being diagnosed with Sjögren's and why raising awareness is so important to her by clicking here.

We hope you will join Shannon and step up for Sjögren's in your community by participating in a SSF Walkabout!


We LOVE our Friends!

 

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Today the SSF wants to Sjö you how much we appreciate all the support by giving away complimentary registrations to two people for the 2013 SSF National Patient Conference "Discover the Possibilities" April 12-13, 2013 at the Hyatt Regency Bethesda!

Due to the overwhelming amount of interest, we have decided to giveaway 3 Free Conference Registrations.

Congratulations to our winners: Donna, Mary & Shawn. The winners have all been notified personally by the SSF and thank you all for the support!

Entering is easy! (this givaway is now closed)

To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2013. The Foundation will privately email the two winners on February 15, 2013. Winners will be picked at random and the registrations are non transferable. Please email us at tms@sjogrens.org with any questions.

Conference Details:
Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, Maryland 20814

   describe the imagePresentation topics will include:

  Overview of Sjögren’s Syndrome
  Sex and Living with Sjögren’s
  Biologic Therapies and Sjögren’s
  Understanding Blood Changes and Test Results
  Caregiver/Patient Perspective on Sjögren’s
  Neurological Complications and Sjögren’s
  Dry Eye and Sjögren’s
  Dry Mouth and Sjögren’s
  Podiatry Issues and Sjögren’s
  Hope for the Future: Research Update

 

When I was diagnosed with Sjogren's, my first thought was…

 

"What the heck is that?"
     -Iris

"Well, that makes a lot of sense but now what?"
     -Shelly

"I'm a man, I cannot have this."
      -Joe

“What? That’s all I need on top of Fibromyalgia (FMS).”
      -Donna

“I told you so!”
       -Sarah

"I remember seeing that disease in nursing school a long time ago."
      -Beverly

"Thank God for the diagnosis!"
      -Renee

"That explains a lot"
     -Karen

“WHAT IS THAT?”
      -Nancy

“How is this going to affect my life?”
      -Melaca

“I have what?”
      -Abby

 

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Faces of Sjögren's- You are not alone!

As the Foundation announced in the January 2013 issue of The Moisture Seekers, we've added a new section to our website: Faces of Sjögren's.

With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjögren’s by 50% in 5 years” we are also hoping to change how Sjögren’s is understood.

On this new web page, patients share their journey with Sjögren's starting from their first thought after being diagnosed to where they are currently. Now that you've read their first thought, find out what happens next and read their full story on our website.

 Click Here to see all of our Faces of Sjögren's stories

 

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