April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

10 Facts about Rheumatoid Arthritis (RA)

According to the Mayo Clinic, Rheumatoid Arthritis (RA) is an autoimmune disease that occurs when one’s body attacks the synovium (the lining of the membranes surrounding one’s joints). Read on to learn 10 interesting facts about this chronic autoimmune condition.

1. Joint pain is a hallmark of the disease

The John Hopkins Arthritis Center states that pain and swelling of the small joints—such as those in the hands and feet—is a hallmark symptom of the disease. However, any joint in the body can be affected by RA. Other than pain and swelling, the inflammation caused by RA can lead to stiffness, deformity, and even loss of function. Joint damage occurs in 80% to 85% of affected patients, with the majority of the damage occurring in the first two years of developing the disease.

2. RA doesn’t just affect the joints

Although joint pain is the most common symptom, RA affects more that just one’s joints. Other manifestations of the disease include eye inflammation, a low white blood cell count, subcutaneous nodules (skin lesions), fatigue and lung disease. What’s more, RA is known to be associated with a higher risk of lymphoma (a type of cancer), anemia (low iron levels), osteoporosis, and depression.

3. It puts patients at risk for death

Left untreated, RA increases one’s risk of mortality. The John Hopkins Arthritis Center states that untreated individuals with RA are twice as likely to die compared to unaffected individuals of the same age. Furthermore, RA can reduce life expectancy by 10 to 15 years.

4. It’s more common than you think

RA is in fact the most common type of autoimmune arthritis, affecting more than 1.3 million Americans. Approximately 75% of all RA patients are women, and 1-3% of the American female population is predicted to develop the disease over the course of their lifetime.

5. People of all ages can be affected

A common misconception of RA is that it’s an ‘old person disease’. Not true. The onset of the disease most commonly occurs in those ages 30 to 50; however, anyone of any age can develop the condition. Furthermore, juvenile rheumatoid arthritis, which occurs in those ages 16 and under, currently affects 50,000 children and youth in the U.S. alone.

6. There are other types of arthritis too

RA is mistakenly believed to only affect senior citizens, since it is often confused with osteoarthritis, which occurs when the protective cartilage that cushions the ends of your bones wears down over time. Other types of arthritis include psoriatic arthritis, ankylosing spondylitis, and gout. To learn more about each of these different types of arthritis, visit the John Hopkins Arthritis Center’s website.

7. There are multiple risk factors

Although the exact cause of RA is unknown, scientists believe that a combination of genetic and environmental factors may put individuals at a greater risk of developing the disease. Beyond being female and middle-aged, other risk factors include: having a family history of the disease, smoking, exposure to substances like asbestos or silica, and obesity.

8. There are a variety of treatment options

Rheumatologists often prescribe non-steroidal anti-inflammatory drugs (NSAIDs) to reduce the inflammation and pain associated with RA. Other prescription medications that treat RA include corticosteroids, disease-modifying antirheumatic drugs (DMARDs), and biologic response modifiers. Non-pharmaceutical treatment options include physical therapy, chiropractor treatment, and in some cases, surgery. To read more about these treatment options, visit the RA Support Network website.

9. The prognosis of the disease varies

Some patients with RA report only mild symptoms that place few limitations on their everyday lives. However, other patients experience significant pain and impact on their lives, including their ability to work. One of the main factors that predicts the disease prognosis is early detection. The earlier RA is identified, the sooner it can be effectively treated and joint inflammation and damage can be reduced.

10. There is hope

If you or a loved one has been diagnosed with rheumatoid arthritis, check out the American College of Rheumatology’s patient education videos to learn more about the condition. Additional patient and caregiver resources can be found on their website, including fact sheets, case studies and current news.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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