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

Announcing SSF's 2015/2016 Research Grantees

Posted on Sun, Jan 31, 2016

SSF_Research_2016It is because of your generous support that the SSF is able fund talented researchers and expand the Foundation's research program. We strive to foster research that will have the greatest potential impact on Sjögren's patients, ensuring new therapeutics are developed and a cure is found. 

The SSF research program is designed to reward exceptional research efforts and encourage investigators to continue their focus on Sjögren's throughout their careers. Many of our researchers' work has led to larger grants by other institutes to continue their work and new Sjögren's breakthroughs!  

The Foundation is proud of the work we fund and would like to share with you the five new 2015-2016 SSF Research Grant Recipients and the 2015 SSF Outstanding Abstract Awardee:

Marit Hoeyberg Aure, PhD     
Postdoctoral fellow 
Center for Oral Biology
University of Rochester
Cell lineage analysis in lacrimal gland maintenance and repair
Download Abstract

Alan Nathaniel Baer, MD
Associate Professor of Medicine
Department of Medicine (Rheumatology)
John Hopkins University School of Medicine
Comprehensive analysis of antibodies in Sjögren’s using phage immunoprecipitation sequencing
Download Abstract

Maria C. Edman, PhD
Research Associate
Department of Pharmacology and Pharmaceutical Sciences 
University of Southern California, School of Pharmacy
Tear fluid and serum levels of Cathepsin S and its endogenous inhibitor Cystatin C as biomarkers for Sjögren’s 
Download Abstract

Markus Hardt, PhD
Assistant Member of the Staff
Department of Applied Oral Sciences
The Forsyth Institute
Identification of proteolytic profiles diagnostic of Sjögren’s
Download Abstract 

Petros Papagerakis, DDS, PhD
Assistant Professor of Dentistry
Orthodontics & Pediatric Dentistry
Clinical Significance of Circadian Rhythms Disruption in Sjögren’s Pathogenesis
Download Abstract 


 

The SSF Outstanding Abstract Award is designed for the Foundation to recognize excellence in research by new and/or young investigators who present outstanding abstracts on Sjögren’s research at professional meetings.SSF_Blog_Research_picture-1.jpg

Awardeed at the 2015 American College of Rheumatology Scientific Meeting

Erlin A. Haacke, MD
University Medical Center Groningen (UMCG), The Netherlands

Abstract: Salivary Gland FcRL4+ B-Cells Are a Potential Source of Progenitor Cells for MALT Lymphoma in Primary Sjögren's Syndrome   Download Abstract

Click here to learn more about the SSF Research Program

Topics: Sjogren's, Research

The TIME is NOW – SSF Plans for 2016

Posted on Mon, Jan 11, 2016


ssf_logo

Happy New Year! 

As many of you know, the Sjögren’s Syndrome Foundation (SSF) has been methodically working towards making the lives of Sjögren’s patients better! Thanks to the dedication of our Board of Directors, our staff and hundreds of volunteers, the SSF has been actively working on our overall strategic plan to make Sjögren’s a household name, increase treatment options for Sjögren’s while also helping to educate healthcare professionals on how to treat and manage Sjögren’s.   

Last year was a banner year for the SSF but 2016 is already proving to be even more exciting! There is still a lot of work to be done, but we know with the help of you, our volunteers and our staff, we are going to see great strides in many areas for Sjögren’s.

The time is now and here are just some of our plans for 2016:

  • Continue to expand the SSF’s Clinical Trials Consortium (CTC) and encourage the development of therapies for Sjögren’s. The SSF’s CTC works alongside companies that have compounds/ molecules currently under review for clinical trials in Sjögren’s. We help these companies better understand the disease, our patient community and encourage them to develop a treatment. In 2016, we plan to see more than 10 clinical trials started for a Sjögren’s therapeutic that will treat the entire disease, not just one symptom! This work of our CTC has been years in the making and we are most excited about how a therapeutic will be a game changer for Sjögren’s!
  • Expand our focus of educating all healthcare providers about the severity of Sjögren’s and its numerous manifestations by attending professional conferences, speaking to healthcare organizations and utilizing the SSF’s Awareness Ambassadors to expand our reach into physicians’ offices by educating them about the SSF and our resources.
  • Work alongside the FDA to help them understand the need for Sjögren’s therapeutic and educate them about the severity of Sjögren’s.
  • Fund new and innovative research that will lead to new biomarkers, diagnostic tools and learning what causes Sjögren’s through the SSF Research Grant Program. The SSF also will work with young investigators to encourage and recognize their work, in hopes that they pursue a career in Sjögren’s.
  • Continue the peer review process for our Clinical Practice Guidelines on the systemic manifestations of Sjögren’s. Our committee of rheumatologists will continue to focus on writing recommendations for how to treat and manage the 16 systemic manifestations that we identified need guidelines. These include fatigue, joint pain, lymphoma, internal organ involvement, etc.
  • Conduct a comprehensive national patient survey to gather crucial information about the numerous complications patients experience as well as the burden of the illness and their quality of life. The SSF is partnering with Harris Polling, a division of Nielson, to develop this survey with plans of distribution in late February. The findings of our survey will help the SSF, as we represent the patient voice and advocate for all Sjögren’s suffers.
  • Further our support of patients, family and caregivers through our website, patient materials, monthly patient newsletter as well as new resources we are developing for 2016.

 And in the few short days of 2016, the SSF has already seen two major accomplishments:

So as you can see, the time is now and the SSF has big plans for 2016! The progress the SSF continues to make and the recent advancements in Sjögren's research and awareness speaks to the combined efforts of hundreds of volunteers. It is because of their willingness to share their story, attend our events, volunteer their time, donate to the SSF, we are helping to create a future of hope for all patients and their families. s_taylor_headshot-1copy-1

It will take an army to achieve our plans for 2016, so I hope you will consider stepping up and getting involved! The Time Is Now!   

Sincerely,

Steve_Sig
Steven Taylor,
SSF Chief Executive Officer

Click Here to Learn More Ways to Connect with the SSF!

Topics: Treatment, Advocacy, Research, 50in5: Breakthrough Goal, Clinical Trials

What the SSF Means to Me

Posted on Mon, Dec 28, 2015

 by, Elizabeth Chase 
 
Elizabeth_Chase_2The Sjögren’s Foundation (SSF) has really been an incredible resource for me. I was diagnosed 5 years ago at age 24 and felt very confused. I had heard of Lupus as my best friend has it, but had no clue about any other autoimmune diseases. When I first searched the word Sjögren’s, the foundation came up. I immediately consumed everything they had to offer and became a member. I then found the Boston support group, and started fundraising for them online. 

When I attended my first SSF National Patient Conference in 2013 I met my life line - the Foundation's Under 40 with Sjögren’s Group Support Group. They are my go-to for everyday questions and are a great support system. Thanks to the Foundation, I have been able to share information about Sjögren’s with my doctors and family. Recently, I've participated in an SSF Walkabout, organized my parents retirement parties as Sjögren’s fundraisers and helped kick off the Boston Sip for Sjögren’s event!

I'm very grateful for the support I have found with the Foundation and the information and resources it has provided me with. This is why I support the SSF! 

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member
 
ssf_logoThe SSF was founded by a patient, for patients and the Foundation will never lose that focus. It is because of your generous support that the SSF continues to soar to new heights on our journey to transform a future of hope for all Sjögren’s patients!

So on behalf of the SSF and our volunteer Board of Directors, I want to thank each of you for sharing your story, attending our events, volunteering your time and donating to our programs. Without you, we would not be able to share the amazing successes that we were able to achieve in 2015 and build on this momentum in the New Year. 
 
Wishing you and your family a Healthy and Happy New Year!
 
Sincerely,
Steve_Sig
 Steven Taylor
Chief Executive Officer 
Donate to Research
 
We encourage you to comment below & share what the SSF means to you. 

Topics: Depression, Sjogren's, coping with sjogren's, National Patient Conference

All About Clinical Trials & Sjögren’s

Posted on Mon, Dec 14, 2015

ssfA clinical trial is important because it contributes to the advancement of science. It provides the participants an opportunity to receive potential benefit from a drug, medical device or procedure or even a lifestyle change such as diet or exercise. In a clinical trial, a new medication or product may be compared to one that is currently available. A new medication may be compared to a placebo that has no active ingredients sometimes called a sugar pill. When this new application (medication or product) is studied it may not be known as to whether or not it will help. For that matter whether or not it may be harmful or not make any difference at all.

The investigators that conduct the trials attempt to determine if the medication or product works or is effective. They also attempt to determine if there will be adverse effects associated with the therapeutic intervention. In other words, is it safe for human use? With this knowledge, a determination can be made as to how the use of the product may affect the disease state for which it is being studied.

Clinical trials are designed by investigators who have special interests in particular disease states. The hope is to add medical knowledge relating to the treatment, diagnosis and prevention of diseases.

In general, clinical studies are important because they are designed to add to medical knowledge. Importantly, the results of these trials can make a difference in the care of future patients including possible family members. 

If you are interested in participating in a clinical trial, I recommend that you first talk to your healthcare professional. If their resources are limited, use the Internet and go to www.clinicaltrials.gov to start. There are many websites available. If you are eligible to participate in a clinical trial you may be one of the first to benefit from a new treatment. There are many trials ongoing in multiple disease states. 

Additional sites include:

  • The NIH Clinical Research Trials and You website provides general information on participating in clinical research, with a focus on NIH-funded research.
  • MedlinePlus is a Web-based health information service of the National Library of Medicine. The
  • FDA is responsible for ensuring the safety and effectiveness of drugs, vaccines, and other medical products. Read more about clinical trials and the drug development process on the FDA’s website. 

Good luck!

by Theresa Lawrence Ford, MD CEO & Medical Director of North Georgia Rheumatology Group, PC SSF Clinical Trials Consortium (CTC) Committee Chair

SSF Clinical Trials Consortium

The mission of the SSF Clinical Trials Consortium (CTC) is: To increase the availability and accessibility of therapies for treating Sjögren’s by:

1. Supporting and promoting objectives that facilitate the design of clinical trials through the development of:

  • Biomarkers
  • Novel diagnostics
  • Internationally-accepted classification criteria
  • Internationally-accepted outcome measures

2. Increasing industry partnerships with the SSF

3. Engaging in dialogue with government agencies that oversee therapy approval (FDA, EMA) to develop guidelines for new drug/product approval, speed approval of new therapies for Sjögren's and ultimately ensure corporate interest in drug development

As a member of the SSF, you will receive an email or mailing notifying you about any clinical trials in your area that the Foundation is aware of.

  Click Here to  Become an SSF Member

Topics: Sjogren's, Treatment, Clinical Trials

Patients Sharing with Patients: Holiday Tips

Posted on Mon, Nov 30, 2015

SSF_Holiday_Blog.jpg

The holidays can be a very happy and joyous time reuniting with family and friends, but it can also be a very stressful time, especially when living with a chronic disease like Sjögren's. 

Holiday stresses and winter weather can have a negative effect on a person's symptoms and living with Sjögren's means learning what your new normal is. This is why it's particularly important during the busy holiday season to make sure you listen to your body and do not neglect your mental or physical health. 

The SSF knows that some of the best tips come from patients, which is why we want to hear from you about how you cope with additional stresses and symptoms during this time of year. 

  • How do you manage fatigue with a busy holiday schedule?
  • What is your best tip to make holiday traveling easier?  
  • What advice would you give to a fellow patient dealing with the depression during the holidays?
  • How do you explain Sjögren's and what symptoms you're dealing with to family & friends?
  • What cold weather problem do you find the most difficult when managing your Sjögren's (such as a Raynauds flarenasal drynessdry skin or other symptom) and how do you effectively cope? 

Just as one product may work well for one patient but not another, you will need to discover what coping techniques works best for you. Please comment below and share your suggestions.

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On behalf of the SSF family, we wish you a healthy and joyous holiday season! 

Topics: Depression, Dry Nose, Fatigue, Dry Skin, Top 5 Tips, Dry Nails, coping with sjogren's, Flare,

Ask the Expert: Sjögren’s & Lymphoma

Posted on Fri, Oct 30, 2015

Question_and_Answer "I know as a patient with Sjögren’s I am at a higher risk for Lymphoma, is there anything my dentist could be on the lookout for to help catch it early?"

 This is true; patients with Sjögren’s have an increased risk for developing lymphoma. Most commonly, the lymphoma associated with Sjögren’s is low-grade non-Hodgkin’s B-cell in nature. Visiting a dentist regularly, at least twice a year, is essential, as early detection may affect treatment.

What does lymphoma in the mouth look like?

  • The tumors associated with non-Hodgkin’s lymphoma usually present as non-tender, slow growing masses that may arise in several areas of the body including the neck or the oral cavity. In the mouth, lymphoma presents as a diffuse, non-tender swelling that may be described as boggy. Occurring with higher frequently in the gingiva, posterior (closer to the throat) hard palate and buccal vestibule (the area between the gums, teeth and cheek), these masses are often red or blue-purple in color.

So what does this mean?

As stated earlier, visiting a dentist regularly and routinely is extremely important for early detection. Additionally, when visiting your dentist, make sure to tell him/her of your history of Sjögren’s. It is important that your dentist conducts a thorough and comprehensive head and neck examination, which includes palpating the cervical lymph nodes (lymph nodes in your neck) as well as lifting the tongue and assessing the lateral borders (teeth sides of the tongue), the hard palate, floor of the mouth, buccal vestibules, soft palate, gingiva and the remaining soft tissues in the oral cavity.

Is there anything I can look out for?

Yes. It is important to visit your physician if you notice a swelling in your neck that persists for more than two weeks. You should also visit your dentist if you notice a swelling in your mouth that remains for more than two weeks. As a rule of thumb, if you notice any lesions in your mouth that remain for more than two weeks, it is recommended that you visit your dentist.

by Lauren Levi, DMD, Dental Oncologist 

This information was first printed in The Moisture Seeker, SSF's patient
newsletter for members.

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Topics: Diagnosing Sjogren's, Dry Mouth, Sjogren's, Treatment, Swelling in the neck, Lymphoma, Sweling in the mouth

How I Found a New & Happier Life with Sjögren’s

Posted on Thu, Oct 15, 2015

My Sense of Humor is Dry, and so is Everything Else! I’ve always had a dry sense of humor coupled with an optimistic personality. But I must admit, when I was diagnosed with Sjögren’s, it took me quite a bit of time to go through the grieving process and create a bold life with my sense of humor intact.

I love those stories about people who are able to accept the diagnosis and immediately say, “Sjögren’s, I may have you but you will not have me.” That was not my experience. In fact, I found that that more I challenged my Sjögren’s, the more it did have me!

JanetLike all of you, I now can look back and pinpoint when I was presenting early Sjögren’s symptoms. My early symptoms began in 1997 as ongoing sinusitis and exhaustion. For a decade, symptoms escalated until I was hospitalized for two weeks.  Nine-months after my hospitalization I was finally diagnosed with Sjögren’s January 2007.

I was relieved to have the diagnosis and excited to look Sjögren’s in the face and tell it, “You will not have me! I am a fighter, an optimist, a model patient and I will knock you down.”

Although it turns out a fighting attitude was not what I needed and it took three years for me to find my way after my diagnosis. I was fighting Sjögren’s to regain my “old self” and my previous life. What I needed was to love and embrace my Sjögren’s in order to see my “whole self,” accept my previous life as a point in time, and find my “new self.”  After all, I was young with a lot of life in front of me. It was time to explore new aspects and add to the journey.

Here are my big revelations about what worked for me. Perhaps you can find some tips for yourself or for a newly diagnosed friend.

I embraced my disease instead of fighting it
Instead of imagining an internal army kicking the sh** out of Sjögren’s (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjögren’s to calm it down was what finally did the trick. 

I think of my Sjögren’s as a small girl who is tired and acting out (and yes, I recognize the “inner child” similarity here). I finally realized that I was already attacking myself and launching emotional attacks to combat Sjögren’s was perhaps adding fuel to the fire.  So I tried the tender approach. To me, this was different than the adage “be good to yourself” or “be kind to yourself.” I imagined that the little girl dwelling inside of me was a separate person that I needed to care for. She is not mean or weak, she is in fact strong and confident, so she requires special attention.

If you are a person who tends to take care of everything and everyone around you, then this imagery might work for you too. After a few years of practicing this imagery, I now can take a short-cut and just “be good to myself.”

I didn’t make my world too small
There have been times when I focused mostly on Sjögren’s and what I could not do.  I found that my world started shrinking and became quite small. That was not the life I wanted so I had to train myself to think of all the things I CAN do. Along the same lines, I started asking the question “Why Not?” instead of “Why.” Try it, it’s a good practice!

Beauty & Nature Matter
I moved Sonoma, CA wine country in order to have natural beauty surround me. Not everyone can pick up and move, but everyone can take a nature walk. Be still in nature and soak in what you find beautiful.

I feel the same about the beauty and healing powers of music and art! I listen to new music and dance while making dinner almost every night. 

Work and productivity
For years, I managed my work time and stress by consulting on a project basis.Two years ago I co-founded a software company and was concerned about the workload, but I have been fascinated at how well I feel! I don't work the crazy hours of my youth, and I don't see that as a shortcoming.  I know my experience and wisdom (no longer sweating the small stuff) is more valuable to the company than extra hours. Even though I have periods of exhaustion, I’m actually feeling the best I have ever felt with Sjögren’s. 

Because I am challenged and doing something I believe I’m good at, I believe my Sjögren’s is better controlled. I do have to manage stress and discipline myself to not “power through” things, which makes me feel worse. But this is all part of taking better care of myself and knowing the right work-life balance. You might find that managing your best work-life balance can help you too!

“No” is a complete sentence and it’s ok!
If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the “something else.” It’s also time to let go of feeling bad about it! 

Be a Good Friend
My friends have had my back when I was not doing very well.  In fact, a couple of friends certainly gave more than they received for a few years. One day I asked myself “Would you want to be your friend?”  I didn't like the answer so I vowed to be a good friend to those I love. In order to do that, I had to relinquish a relationship that took too much negative energy so that I had positive energy for those who lifted me up. I still make new friends, but I manage my energy and time well.

Give Back to Something
Find what is important to you and give some time to it. Although make sure you are using positive energy and that you’re not pushing beyond your limits. I have several community things I support, but being on the Board of the Sjögren’s Syndrome Foundation brings me great satisfaction.  It combines three things for me. First, my desire to know more about the disease. Secondly, my desire to speed research for a cure. Finally, my desire to help others understand and deal positively with their Sjögren’s

I have been amazed at how much the SSF actually accomplishes on our behalf and I know we will accomplish our 5-Year Breakthrough Goal of shortening the diagnosis time 50% in 5 years. I am proud to be part of making that happen for our community! 

Sleep, Exercise, Food & Wine
Sleep is my best tool! I go to sleep when I’m tired and wake up when I’m ready. And exercise is something that always makes my joints feel better. 

I love food and wine. I feel my best when I eat an organic diet of fruits, vegetables and proteins, exercise daily and steer clear of carbs and sugar (which includes wine). But I live in wine country for goodness sake so I’m going to drink wine. I do so many things “right” so that I can enjoy a glass of wine when I like (preferably a really good Pinot Noir, with really good friends).

Today, I have my Sjögren’s in steady order by taking pretty good care of myself and making sure I balance all things in my life that define, for me, a bold life. Now I work smart and play smart. I do have daily symptoms that I stay on top of, but I simply accept them as part of my life now. Just like aging. And menopause. Good thing I’ve got my sense of humor back to deal with that!

This article was first printed in the The Moisture Seekers, SSF's patient newsletter for members.

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

 

PS: I lifted the first line of this article from fellow SSF board member Dr. Herb Baraf, who at our last Board of Directors meeting stated, “The SSF, even our sense of humor is dry.”  Funny man!

Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, 50in5: Breakthrough Goal

Ask the Eye Doctor: Why do my dry eyes hurt in the morning?

Posted on Wed, Sep 30, 2015

Q) Why do dry eyes feel awful in the morning when I first wake up, especially if I don’t use an eye lubricant at night?

Dr. Stephen Cohen

A) There are certain conditions that can get worse during the night with the eye in a closed state. For example, if you have blepharitis, which is caused by a common skin bacteria called “staph epidermidis,” the waste products of the staph are very irritating. But with your eye closed that staph toxin is lying there all night. If I have a patient who wakes up with really irritated eyes, one of the first things I want to look at is untreated blepharitis.

Another possible cause is called “recurrent corneal erosion.” Think about pulling a scab off all the time. It starts to heal and you pull the scab off. If the surface of the eye gets irritated through dryness and adherence to the back of the lid, or through an injury, that tissue needs to heal. The good news is it heals very quickly. The bad news is it hurts a lot as I’m sure you’ve found. So it heals quickly but it doesn’t necessarily anchor itself. That thin, outer layer of the cornea doesn’t anchor itself to the eye very fast, so you run the risk of re- irritating your eye even after you are feeling better. And when you do that over-and-over, it is called “recurrent corneal erosion.” You are basically tearing off the outer layer of the front of your eye. Classic sign is you wake up, you open your eyes and it hurts. Using ointments at night helps. Using an antibiotic ointment would help if you have blepharitis as well because it would treat that and give your eye a little more coating.

Dry Eye Tip!
If you have severe dry eyes and trouble opening your eyes in the morning because your lid is sticking, try to keep your eyes closed when you wake up and use the heels of your hands to gently massage your lids. What this will do is break any of those adhesions that may be there and it stimulates a little tear production so that you can actually open up your eye safely. But if you wake up and open up your eyes right away, you run the risk of – ouch – pulling that adhesion off, again, like pulling a scab off of a wound.

-Stephen Cohen, OD from his talk on Dry Eye at the SSF National Patient Conference

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Topics: Dry Mouth, Dry Eyes, Sjogren's, Joint Pain, Fatigue, Treatment, Blepharitis

Natural Herbs & Spices That Alleviate Dry Eye Symptoms

Posted on Fri, Aug 28, 2015

spices-1Could alleviating dry eye pain be as simple as spicing up your life a little bit? (No, don’t cue Victoria Beckham- we mean that in a literal sense!) There are plenty of natural herbs and spices that are full of dry eye fighting antioxidants. In fact, you might even find dry eye relief in your own spice cabinet! Intrigued yet? We thought so. Behold, some of the best natural herbs and spices to help prevent your peepers from drying out:

Turmeric
This wonder spice was a hit with our dry eye prone friends. Sometimes known as curcumin, turmeric is an Asian spice that is protective against a number of diseases (including dry eye!). However, there’s a catch: turmeric is not always easily absorbed. Experiment with this natural anti-inflammatory anyway- it may help reduce oxidative stress. (P.S. One of our Facebook friends shared her go-to hot beverage for dry eyes a few months back. Try Janice’s recipe: Warm up some almond milk, sprinkle a tsp of turmeric, ½ tsp cinnamon and 1/8 tsp cloves. Finish with a dollop of raw honey. Whisk together and voila, an inventive {and delicious} way to incorporate turmeric into your diet!)

Paprika
Paprika has an extremely high concentration of vitamin A, which is great for warding off dry eye symptoms. Other good news about paprika, it’s an extremely versatile ingredient- and just about everyone has it sitting in the spice cabinet. Try using paprika next time you cook. It’s awesome for boosting flavor- and nutrition! Get a dose of paprika by sprinkling it on potato salads, fish, chicken and eggs. 

Bilberry
You may have already heard that bilberry, a shrub closely related to the blueberry, is great for overall eye health and retinal diseases like macular degeneration. Well, it’s also particularly beneficial for dry, itchy eyes. Extracts from the bilberry fruit help to improve blood circulation, oxygen supply and tear gland function. Additionally, bilberries contain vitamin P and citrin, both of which help to decrease swelling and inflammation in the body; a common dry eye trigger. Experiment with bilberry supplements or tea made from bilberry leaves. However, be careful not to over indulge. Ingest no more than 220 mg of bilberry per day.

Mint
Next time you’re tempted to rub those itchy, stinging eyes, try a spearmint eyewash instead. Simply boil about 10-12 leaves of spearmint in some water. Wait until the solution cools (at least 20 minutes!) and then use a clean face cloth to apply the wash to your eyes. Menthol, the active ingredient in mint, actually stimulates tear production and will leave your eyes feeling energized and refreshed. Plus, it smells amazing! Win-win.

Chamomile
Chamomile is known for its cooling and anti-inflammatory properties. It soothes tired eyes and can help restore moisture. Another bonus? Drinking chamomile tea makes you feel sleepy and prepares you for rest, so it’s the perfect drink to sip on after a long day.

So, there you have it; options for natural dry eye relief. Of course, the above mentioned are merely a few of the wondrous herbs and spices that can alleviate dry eye pain.  Other potential dry eye fighters include thyme, fennel, marigold and calendula.

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This article is a reprint from AllAboutDryEye.com, which is sponsored by TearLab Corporation and first shown by the SSF in “The Moisture Seekers,” SSF’s patient newsletter.

Topics: Sicca, Dry Eyes, Sjogren's, Treatment

Sjogren’s Health Insurance Reimbursement 101

Posted on Tue, Aug 11, 2015

The Sjögren’s Syndrome Foundation (SSF) knows that obtaining healthcare and dental reimbursement can be a major challenge. Having Sjögren’s places a high enough burden on patients, and adding the barriers patients face in obtaining health insurance reimbursement increases that burden greatly. These tips below should help you increase your chances of success when requesting reimbursement and appealing denials for a claim. 

Tips for Health Insurance 

SSF_Health_InsuranceKnow your insurance policy and what it covers.
  • Note whether prior authorization is needed for a specific therapy or procedure.
  • Understand co-pays and how much you will be expected to contribute to the cost.
  • Know whether your insurance company requires “step therapy,” which means you must try and fail one therapy before the next level of therapy can be covered. 
Make sure your medical records are accurate.
  • Maintain copies of your medical records. You have the right to receive copies of all of your medical records. Note that you can be charged a copy fee.
Include a Letter of Medical Necessity.
  • A Letter of Medical Necessity is usually written by the physician explaining why a therapy or other treatment is medically necessary. This can be included with an initial claim or included in the appeals process.
  • A Sample Letter of Medical Necessity for dental treatment can be found on the SSF website under “Brochures and Resource Sheets.
Know how your insurance company handles biologics if you are considering one.
  • Insurance companies can exclude a drug from coverage or it might be a “tiered” drug, meaning one that is designated at a certain level for how much the patient must cover.
  • If not covered, or if the patient coverage is too high, request an exemption along with an explanation about why you need the drug from your physician.
Always appeal denials!SSF_Apeal
  • Appeal a denial at every level. Most patients receive at least partial reimbursement upon appealing a negative decision from their insurance company.
  • Involve your doctor in helping you respond to a denial. 
  • Familiarize yourself with your insurance company’s guidelines and deadlines for appeal. This information is usually included in the denial letter.
  • Make sure you have the necessary documentation showing that your case meets the insurance provider’s guidelines and demonstrates medical need.
  • Maintain records of your communication with the insurance company and document every time you speak or hear from a company representative. Record the person’s name, date, time and key messages from the conversation.
  • Understand why you were denied, so you can address the reason(s) directly.
  • If you are communicating with the Customer Service office of the insurance company and are dissatisfied with the response, ask for a Nurse Case Manager or a Supervisor who might be more understanding of your situation.
  • When possible, demonstrate that treatment is more cost-effective than alternatives or non-treatment. 
  • If you are still denied following the final round of appeals, contact the advocacy or patient assistance program for the company that produces the therapy. Most companies have divisions that take applications for financial assistance for their therapies.

This information was first printed in the The Moisture Seeker, SSF's patient newsletter for members, and is one of the SSF Patient Education Sheets. 

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Topics: Sjogren's, Tooth Decay, Treatment, Punctal Plugs, Advocacy, Health Insurance Reimbursement

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