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

Ask the Expert: Light sensitivity and headaches with Sjögren's

Posted on Fri, Oct 25, 2019

Question_and_Answer

“I’ve been experiencing light sensitivity and have been getting more headaches. Is this common with Sjögren’s?”

Most people who have Sjögren’s will have dry eyes, also called keratoconjunctivitis sicca. Sensitivity to light (also known as photophobia) is one of the common symptoms experienced by people who have dry eyes, though not everyone with dry eyes experiences light sensitivity. However, dry eyes alone do not commonly cause headaches. The most common cause of light sensitivity and headaches would be migraine headaches. If your headaches are primarily located on one side of the head, then there is a good chance that this problem could be related to migraine rather than to dry eyes. Migraine headaches are also often associated with nausea, sound sensitivity, and typically get worse with physical activity. If these apply to your headaches, then you should ask your doctor if you may have migraine headaches, which require treatment different than that used for Sjögren’s dry eyes. 

If your headaches primarily occur after comput- er work, then the possibility of “Digital Eye Strain” should be considered. The American Optometric Association (AOA) also calls this “Computer Vision Syndrome.” Having poor ergonomics and posture while performing prolonged computer work can cause strain on the joints and muscles of the head, neck, and shoulders which can, in turn, lead to muscle tension headaches. Dry eyes also typically worsen during computer work. While concentrating on computer work, blinking is reduced by a third or more, resulting in increased evaporation of the moisture covering our eyes. Common symptoms of Computer Vision Syndrome include headaches, blurred vision, dry eyes, eyestrain, and neck and shoulder pain. Both the AOA and the American Academy of Ophthalmology recommend abiding by the 20-20-20 rule: take a 20-second break every 20 minutes during computer work to view something 20 feet away to help minimize this problem. Other things you should do while performing computer work include concentrating on blinking more often, using artificial tears frequently, using an anti-glare computer screen protector, using a desk humidifier, and positioning your computer screen so that the center is 4-5 inches below eye level.

Some patients who have Sjögren’s can have other problems with their eyes that can cause light sensitivity but are much less common than dry eye. Inflammation of the white portion of the eye (the sclera) is called scleritis, and inflammation of the colored portion of the eye (the iris) is called iritis (or anterior uveitis). Both of these cause light sensitivity and usually cause the sclera to become red or pink, causing eye pain rather than a true headache. These two conditions are also treated differently than dry eyes.

The best person to sort out these possibilities is an eye doctor, either an ophthalmologist (a medical doctor, MD; or a doctor of osteopathy, DO) or an optometrist (optometry doctor, OD). If you have been diligent with treating your dry eyes with artificial tears every few hours, using a humidifier, not smoking, staying hydrated, etc. and the light sensitivity and headaches continue, I would recommend that you call and see your eye doctor as soon as possible for appropriate evaluation. The correct treatment depends upon identifying the actual cause of your symptoms.

By Donald Thomas, MD
 
This information was first printed in The Moisture Seekers, SSF's patient  
newsletter for members. 

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Topics: sun and sjogren's, Dry Eyes, Symptoms, Sjogren's, Sun Sensitivity, Light Sensitivity

Ask the Doctor: Skin Rashes and Sjögren's

Posted on Mon, Sep 23, 2019

Skin Rashes and Sjögrens

Skin rashes most certainly occur in the setting of Sjögren’s. As opposed to many of the other autoimmune skin rashes that I see in my autoimmune dermatology clinic, there are no rashes that are specific for Sjögren’s. In other words, I cannot look at a rash in a Sjögren’s patient and immediately tell them that they have Sjögren’s. In comparison, I can often look at a lupus rash and tell the patient they have underlying lupus. That being said, Sjögren’s patients exhibit a variety of skin rashes that are important to recognize and know when to see a board-certified dermatologist.

By and far the most common skin conditions associated with Sjögren’s are xerosis, or clinically dry skin, and eczematous dermatitis. These are caused primarily by barrier dysfunction of the skin. Gentle skin care practices and liberal moisturizers are the best way to prevent these common skin eruptions. When caring for your skin you should take no more than one short, lukewarm shower per day. You should remain in the shower for less than 10 minutes. Soaps like Dove sensitive and VanicreamTM, can be utilized as they will not strip your skin. If a wash cloth is used while bathing, it should be limited to areas that give off body odor like the armpits, genital, and buttock areas, in order to not disrupt the skin barrier. Immediately after getting out of the shower, you should pat dry and then apply a moisturizer. Ointments are the best moisturizers followed by creams. Lotions are not typically moisturizing enough for patients with Sjögren’s. The best ointments are Vaseline® or Aquaphor®. If an ointment is too greasy for your taste, cream moisturizers like CeraVe®, VanicreamTM, Eucerin®, or Aveeno®can be used. For itchy skin, Sarna Original lotion can give immediate relief especially when stored in the refrigerator. If scaly, dry skin is present, utilizing moisturizers with lactic acid, urea, or salicylic acid can be used. Examples include: AmLactin®, CeraVe® SA, and Eucerin® Roughness Relief. If your rash is not responding to moisturizers and gentle skin care practices, a prescription corticosteroid cream or a steroid-sparing anti-inflammatory cream may need to be prescribed by your physician.

If you develop a purple-to-red rash that does not lighten, or blanch, with pressure, ulcerations of the skin, or a purple net pattern on your skin, this should prompt you to see a dermatologist for evaluation. Rashes that are associated with purpura (blood spots) can represent vasculitis, an inflammation of the blood vessels. Although these rashes are not as common as the ones discussed above, they are important to recognize in Sjögren’s patients and should be seen quickly by a dermatologist.

Natalie Wright, MD, FAAD

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Sjogren's, Treatment, Dry Skin, Flare,, Sun Sensitivity, Skin Rashes, Vitamin D, Lupus, Vasculitis

Yoga and Sjögren's: There's a pose for that!

Posted on Thu, Sep 12, 2019

As finding alternatives to overall wellness, mind and body, continue to evolve in present day, many holistic health techniques have stood the test of time, proving to offer benefits that heal the body from the inside out. Yoga is one of these holistic healers. Many centuries ago, when yoga was said to be created, ancient peoples made yoga their daily routine to treat and ward off disease and to become peaceful in the mind. The body would react to this practice over- time, ceasing illness and spiritual negativity from the body. As I continue on my journey into offering yoga for therapeutic purposes as a registered yoga teacher, I witness what these ancient yogis were onto. Yoga is a practice that benefits the body in many ways. Different yoga poses promote healing for different body parts. Here are some poses that have exponential benefits:

Energize & Open Your Heart with Camel Pose

Sanskrit Name: Ustrasana

Boost your energy and open your heart with camel pose. This pose is known for eliminating the
feeling of sluggishness or fatigue and promoting energy through the body while creating more oxygen
to the brain. Come to your knees on the floor with knees hip-distance apart. Allow your toes to untuck and stabilize through the legs. Bring your hands to your lower back with palms facing in and finger tips facing down. Push the pelvis forward to create space for the spine to keep alignment. Inhale and lift your heart higher by letting the shoulder blades relax down the back. Exhale and allow your back to release down, energy through the crown of the head as you lean back. Let your neck relax, tensing up here will be counteractive. Breathe deeply for 5 to 10 breaths or until you find comfort in the pose. Inhale to slowly rise back up to a straight spine. Release with a few trunk twists or any movement that will feel good to your body after this pose.

Take a Chill Pill & Relieve Anxiety with Bridge Pose

Sankrit Name: Setu Bandha Sarvangasana

Feeling anxious and nervous about something? Alleviate stress, worry, and anxiety with bridge pose, a beginner’s inversion.

Lie flat on your back with knees bent parallel, feet flat on the ground, arms down by your sides. On your inhale, rise your pelvis toward the sky and keep pushing down through the feet and hands to balance the weight. Take this a step further by placing a block or study pillow under the back to stay with your pelvis elevated. Stay here for about 5 breath cycles. On a slow exhale, lower back down slowly to your mat and repeat.

Ease S.I. Joint Discomfort with Triangle Pose

Sanskirt Name: Trikonosana 

Experiencing aches and pains in your lower back area? It could be something deeper caused by your sacroiliac joint, the pelvis joint formed by the sacrum and ilium. Its main function is to manage stability and weight transfer. While many experience this pain, so few actually know it
is connected with their sacroiliac joint. Visiting a chiropractor if you are unsure is highly recommended, however, spending some time on your yoga mat may be the best way to relieve the pain. Standing poses, like Triangle Pose (Trikonosana), can increase strength in the glutes and rotator muscles, which help support the S.I. joint.

Stand up against a wall and step feet apart with a wide stance, feet should be wider than shoulder-width and toes facing forward. Turn your left toes to face
the side, so that your left foot is now parallel against the wall. Press into both feet, pull up in the knees, and keep the legs straight. Push into the right hip and bring the arms into a T, with finger tips reaching away. Begin to reach your left hand down toward your toes, 
and continue to bring your right arm up and back. Continue to reach until the shoulders are stacked vertically and you reach your shin, toes, or the ground inside your left foot. Engage your core and try to keep your bottom from touching the wall without leaning forward. Breathe deeply 5 to 10 breath cycles. Inhale to rise back up to standing. Reverse the feet and re-peat on other side.

About the Author

Lee-Ann has a deep–rooted, therapeutic connection with yoga, and aspires to create opportunities for others that foster personal growth and well-being. She completed her RYT 200 at Bombay Yoga Company in 2016 and teaches at Mellow Yoga Studio in Philadelphia, PA. Lee-Ann recently created Two Hearts Dance & Yoga.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Sjogren's, Joint Pain, Fatigue, coping with sjogren's, Chronic Pain, Flare,, Natural Treatments, Yoga

Get the Inside Scoop & Receive the SSF Newsletter!

Posted on Thu, Aug 29, 2019

Summer TMS CoverFor $3 a month, you can become a member of the Sjögren's Syndrome Foundation (SSF) and receive great resources, while also supporting the vital work being done to conquer this complex disease.

Join now with thousands of others who subscribe to our newsletter and receive discounts on Sjögren's resources. 

Member benefits include:

  • The Moisture Seekers newsletter: This 10 issues a year print newsletter contains the latest information on Sjögren's, practical tips for daily living, and answers to medical questions from the experts.

  • A New Member packet with helpful information about Sjögren's and the SSF. 
    *U.S. residents only. 


  • You will receive updates on new product launches and information/discounts available to SSF Members for over-the-counter and/ or prescription products.

  • Receive information about upcoming Sjögren's clinical trials and clinical research in your area.

  • Access to a network of knowledgeable volunteers and local support groups.

  • Exclusive access to the members-only section of sjogrens.org, featuring resources unavailable to other site visitors such as archives of the most popular newsletter articles, our online product guide and access to our online community.

  • Members-only discounts on a variety of products and services such as The Sjögren's Syndrome Handbook and registration for our educational conferences.

  • Providing the Foundation with one more voice to increase awareness, educate others, and encourage research – all of which help in the fight to conquer Sjögren's.

    Click here to become an SSF member today and email us at info@sjogrens.org with any questions. 

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Topics: Pulmonary manifestation, Dry Mouth, Dry Eyes, Sjogren's, Joint Pain, Fatigue, coping with sjogren's, Gastroesophageal Reflux, Advocacy, Sjögren’s, Heart disease

Pain and Sjögren's

Posted on Thu, Aug 15, 2019

Pain and Sjögrens Chronic pain is one of the most common symptoms associated with Sjögren’s. I have the interesting position of working as a healthcare provider in the field of comprehensive pain medicine as well as being a Sjögren’s sufferer. My role working as a Physician Assistant and Chiropractor is to help patients manage their pain. In our practice, we treat a variety of diverse conditions with a continuum ranging from carpal tunnel syndrome to abdominal pain and everything in between. While this can be a challenging area of medicine to practice, it is also quite rewarding to assist others in living a more enhanced quality of life.

Prior to being diagnosed with Sjögren’s, I rarely experienced pain. Recently, I was reminiscing back to a time not many years ago in which I only used ibuprofen once or twice over several years’ time. My own personal struggle with Sjögren’s causes me to endure discomfort in various areas of my body every day. I experience joint pain, especially in my knees and fingers. The nerve sensations in my muscles are also very discomforting. Additionally, only since the development of Sjögren’s, I suffer from debilitating pelvic pain. Non-steroidal anti-inflammatory medications ibuprofen and Celebrex seem to help the greatest for my pain. Heat is also quite effective. When I make more anti-inflammatory diet choices, my pain is absolutely better. This includes avoiding excessive sugars, flour, dairy, red meat as well as processed and fried substances. When I regularly take vitamin D and eat fresh cherries the pain also improves. If I have poor stress management and sleeping habits, my pain worsens. Finding motivation for regular exercise can be difficult as I also fight significant fatigue, but I know that movement is necessary to keep my joints and muscles mobile. I also use a TENS unit from time to time as well as over the counter lidocaine products.

It is fulfilling to assist in improving the quality of life of others that suffer from chronic pain. This is especially meaningful being that I endure pain daily. I encourage anyone experiencing chronic pain to seek out a comprehensive pain management specialist for evaluation.

by Rebecca Hosey, DC, MSPAS, PA-C

Dr. Rebecca Hosey is a Board Certified Physician Assistant and Chiropractor. She has practiced interventional pain medicine for many years and was diagnosed with Sjögren’s in 2015.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Symptoms, Sjogren's, coping with sjogren's, Chronic Pain, Vitamin D, Natural Treatments

Acupuncture for Dry Eye

Posted on Mon, Jul 15, 2019

acupuncture July is Dry Eye Awareness Month!  We hope you enjoy this blog post aimed to promote dry eye awareness and education.

The “Living with Sjögren’s” patient survey, conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation, SSF, showed that 92% of Sjögren’s patients suffer from dry eye. Chronic dry eye has two main causes: decreased secretion of tears by the lacrimal (tear-producing) glands and loss of tears due to excess evaporation. Both can lead to ocular surface discomfort, often described as feeling of dryness, burning, a sandy/gritting sensation, itchiness, visual fatigue, sensitivity to light and blurred vision. In Sjögren’s, a person’s white blood cells mistakenly invade moisture-producing glands and affects the entire body, including the lacrimal glands, causing inflammation and reducing secretion, which causes dry eye to be one primary symptoms of the disease.

Chronic dry eye does not typically get better on its own, and often times it will get worse. Acupuncture is a very safe treatment, and apart from occasional bruising, its side effects typically include improved sleep quality, relaxation of tense muscles, and a sense of wellbeing.

Question_and_AnswerCan acupuncture increase moisture with dry eyes?

The beauty of acupuncture is that it does not build a dependency and in fact builds independence by helping to rebuild and restore function to various body systems.

A study published in the Chinese Journal of Practical Ophthalmology “found that patients receiving acupuncture plus lubricant eye drops had a 76.92% improvement in rate of dry eye symptoms. Patients receiving only lubricant eye drops had a 53.85% improvement. Tear film stability improved significantly with acupuncture. Patients receiving acupuncture plus eye drops had a tear film break-up time of 4.03 seconds compared with 2.11 seconds for the eye drop only group.” This means that acupuncture resulted in increased tear production and slower tear evaporation, so tears last longer.

Another study, published in Ophthalmology Times, found that acupuncture “significantly improved patients’ subjective assessment of dry eye symptoms, was associated with significant reduction in use of artificial tears at six months, and its benefits lasted for 9-12 months.”

Having an autoimmune disease, like Sjögren’s, can be stressful and overwhelming at times, often leading to poor sleep quality. All of these work against creating and maintaining healthy levels of serotonin, which is fundamental to healthy tear production.

Receiving regular acupuncture helps maintain healthy serotonin levels, as well as to decrease inflammation, increase circulation, and stimulate the nervous system to focus on a specific region, such as the eyes.

What does this mean for Sjögren’s patients?

It means that although you have Sjögren’s and may always have to work to maintain a reasonable number of tears, a combination of diet, stress management, and acupuncture may be able to minimize and help keep your symptoms at bay.

Dr. Townsend, adjunct professor at the University of Houston College of Optometry, says that “the potential patient benefits of acupuncture suggests that, at the very least, we should consider contacting an acupuncturist and explore working together as a possibility.”

Acupuncture has become so popular in the past few years that everyone is adding it to their list of services. Look for a National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM®) board certified acupuncturist who has a minimum of four years of formal training and countless hours of clinical experience to ensure the best possible experience.

by Chris Leininger, DACM (c), Dipl. Ac. & ABT (NCCAOM), L.Ac., Founder and Director of Pure Health Acupuncture, LLC in Brazil, IN.

This information was first printed in The Moisture Seeker, SSF's member newsletter.

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Topics: Dry Eyes, Sjogren's, Treatment, coping with sjogren's, Natural Treatments, Acupuncture Treatment

RESEARCH UPDATE: New Breakthrough from SSF Grantees

Posted on Thu, Sep 07, 2017

 "Findings yield new clues to puzzling autoimmune disease"

OMRF.jpgOklahoma Medical Research Foundation (OMRF) scientist and former SSF research grant recipient, Kathy Sivils, Ph.D., and her colleagues have identified a strong association between a variant in a gene called OAS1 and susceptibility to Sjögren’s. This variant may provide valuable insight into the genetic basis of Sjögren’s, as well as other autoimmune conditions with similar triggers.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researchers led by scientists at OMRF, including two former SSF Research Grantees: Dr. Kathy Sivils and Dr. Christopher Lessard.

“There was very little evidence for a connection to autoimmune disease prior to our study. Firmly establishing this new association with Sjögren’s then led us to look at the gene’s function in more detail,” said OMRF scientist, co-leader of the project and former SSF research grant recipient, Christopher Lessard, Ph.D.

“If we can get out ahead of the disease, it might help lessen the severe damage that can occur in salivary glands and other organs,” Dr. Sivils said. “Early diagnosis and proper treatment are crucial, and discoveries like this one may give researchers and healthcare professionals more to work with as they look for clues to this perplexing disease.”

Although this is only one step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions, and treatments at the disease’s genetic level.

“On behalf of Sjögren’s patients, the Sjögren’s Syndrome Foundation (SSF) applauds OMRF for its commitment to finding the many unanswered questions about the disease,” said SSF CEO Steven Taylor. “Drs. Sivils and Lessard, along with their OMRF colleagues, continue to leave their mark in advancing Sjögren’s research, and patients worldwide will benefit from their hard work.”

It’s because of your generous support that the SSF is able to award grants to talented investigators, like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research. The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice GuidelinesClinical Trials Consortium and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us transform the future of Sjögren’s for all patients and their families. 

Click here to read the full press release from OMRF

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Topics: Sjogren's, Advocacy, Research

Headaches and Sjögren’s

Posted on Thu, Aug 31, 2017

Headaches and Sjogren's.png

Sjögren’s is a systemic autoimmune disease often characterized by dryness of the eyes and mouth and accompanied by chronic fatigue and musculoskeletal pain. Over half of Sjögren’s patients experience systemic symptoms, some of which can involve the nervous system. One of the most common symptoms involving the nervous system is headache. Headaches are a common complaint in healthy people who do not have an autoimmune disease. Some of the most common types of headaches include tension type headaches, migraines (with and without aura), and cluster headaches. Headaches are common in Sjögren’s, estimated to occur in roughly 50 to 75% of patients.

headaches .png

Many Sjögren’s patients may wonder whether or not their underlying autoimmune disease is causing the headaches. Although the answer to this question is largely unknown, some research comparing Sjögren’s patients with healthy controls show that tension-type headaches and migraine headaches, the most common headache subtypes found in Sjögren’s, are more common in those with Sjögren’s than in the general population. Other data demonstrate headaches are more severe in those with Sjögren’s than in those of the general population with depression as a significant influence on headache severity.

Sjögren’s patients may also develop a rare and particularly severe type of headache caused by inflammation of the outer lining of the brain (the leptomeninges) called aseptic meningitis. Although meningitis in general is typically caused by infectious agents like viruses and bacteria, in aseptic meningitis, the inflammation is not caused by infection but rather by other causes such as a reaction to a medication or autoimmune activity. In addition to headaches, aseptic meningitis may also be associated with fever, neck stiffness, and other neurologic symptoms such as double vision. 

In general, treatment for routine headaches is the same in those with Sjögren’s as it is for anyone else including medications such as acetaminophen or ibuprofen. Treatment for aseptic meningitis may also involve glucocorticoids such as prednisone. For those Sjögren’s who suffer from headaches, it is important to discuss this symptom with the primary care practitioner and rheumatologist to see if further evaluation is warranted.

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

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Depression, Symptoms, Sjogren's, Treatment, coping with sjogren's, Headaches

Ask the Expert: Sjögren’s and Fibromyalgia

Posted on Wed, May 31, 2017

Sjogren's Body 2017.png

"I have been diagnosed with Sjögren’s and fibromyalgia. How do I know what symptoms are because of my Sjögren’s and which are from the fibromyalgia? 

Should I change how I treat a symptom based on which disease caused it?"

There are many symptoms of Sjögren’s and fibromyalgia that overlap, and many people suffer from both conditions simultaneously, so this is a very good question. For example, both disorders can cause symptoms of dry eyes. If the dry eyes is due to Sjögren’s the person’s eyes will actually be dry, and artificial tears or medications to increase tearing can help. That same symptom seen in fibromyalgia is not due to the eye really being dry, but instead the nerves throughout the body being more sensitive, and feeling dryness when there is none.

Pain is another symptom that both disorders can cause. If it is from Sjögren’s the pain will typically be in the joints, whereas if it is due to fibromyalgia it can be anywhere, and will especially involve the trunk, muscles, etc.

Fatigue is a characteristic of both disorders as well, but it is difficult to differentiate the fatigue of Sjögren’s from that of fibromyalgia, except by “the company it keeps.” By this I mean that if you have overall symptoms of fibromyalgia (pain in many areas, sleep problems, sensitivity to brightness of lights, noises, odors, etc), then the fatigue you are experiencing is likely more due to the fibromyalgia, whereas if there are no other symptoms of fibromyalgia and you primarily are experiencing symptoms of Sjögren’s, then the fatigue is more likely due to the Sjögren’s. 

by Daniel Clauw, MD, Michigan

 

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

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Topics: Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Chronic Pain, Ask the Expert, Fibromyalgia

2017 National Patient Conference Keynote Speaker Announced!

Posted on Tue, Feb 28, 2017

JanetChurch.jpgBack by popular demand, the SSF is thrilled to welcome back Janet E. Church as the 2017 SSF National Patient Conference Keynote Speaker!

The 2017 SSF National Patient Conference, “This is Sjögren’s: An Educational Journey,” will be held March 31 – April 1, at the Crowne Plaza Philadelphia/Cherry Hill.

Janet is an entrepreneur, tech-industry veteran, Sjögren’s patient and Chair-elect of the SSF Board of Directors. We know you'll enjoy hearing Janet's newest talk!

Click here to read a past SSF blog from Janet Church

 

Click Here to View the 2017 SSF Conference Brochure with Schedule & Printable Registration Form

Topics: Sjogren's

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