The Silent Struggle: Living with Sjögren’s Syndrome and Autoimmune Diseases

Autoimmune diseases are often referred to as "invisible illnesses"—chronic conditions where the body’s immune system mistakenly attacks its own tissues. Among the wide array of autoimmune disorders, Sjögren’s syndrome stands out for its complexity, unpredictability, and the way it quietly erodes quality of life. Despite affecting millions worldwide, Sjögren’s remains underrecognized and frequently misunderstood, even by healthcare professionals. For those living with it, the path to diagnosis and treatment can be frustrating, exhausting, and deeply isolating.

What Is Sjögren’s Syndrome?

Sjögren’s syndrome is an autoimmune disease primarily known for causing dryness—especially dry eyes and dry mouth—due to the immune system targeting moisture-producing glands. However, its impact can be far more extensive. It can affect joints, lungs, kidneys, blood vessels, nerves, and digestive organs. Many people also experience overwhelming fatigue, chronic pain, and cognitive dysfunction (often called “brain fog”). In some cases, Sjögren’s coexists with other autoimmune disorders such as lupus, rheumatoid arthritis, or scleroderma, making it even harder to diagnose and manage.

The Challenge of Diagnosis

One of the most frustrating aspects of Sjögren’s—and many autoimmune diseases—is how long it often takes to get a diagnosis. The symptoms are often vague, intermittent, and overlap with those of other conditions. A person might visit multiple specialists—rheumatologists, ophthalmologists, neurologists—before someone connects the dots. On average, it takes about 3 to 5 years to receive a proper diagnosis of Sjögren’s syndrome, during which many patients are dismissed, misdiagnosed, or told their symptoms are psychological.

Blood tests can detect antibodies like SSA and SSB, which are commonly associated with Sjögren’s, but not all patients test positive. As a result, even testing isn’t always conclusive. Often, a combination of clinical symptoms, lab work, and sometimes a minor salivary gland biopsy is needed to confirm the diagnosis.

Living with Sjögren’s: More Than Dry Eyes

The common perception of Sjögren’s as “just dry eyes and mouth” grossly underestimates its impact. For many, the dryness is debilitating—imagine not producing enough saliva to swallow food comfortably, or eyes so dry they feel like sandpaper. But the real difficulty lies in the systemic nature of the disease.

Fatigue is one of the most common and disabling symptoms. It's not just feeling tired; it's a profound, bone-deep exhaustion that doesn’t improve with rest. Joint and muscle pain are also frequent complaints, and some people develop neuropathies that cause numbness or burning sensations. In rare cases, complications can be life-threatening, such as interstitial lung disease or lymphoma, which is more common in people with Sjögren’s.

On top of the physical symptoms, many patients deal with anxiety and depression—not just because of the disease itself, but because of the chronic nature of their symptoms, the lack of understanding from others, and the ongoing uncertainty about how the disease will progress.

The Psychological Toll

Living with an invisible illness like Sjögren’s means constantly negotiating with your own body. There’s the daily unpredictability—some days you feel functional, other days it’s hard to get out of bed. There’s also the pressure to “look fine” and carry on with work and social obligations, even when you're far from okay.

This disconnects between appearance and reality can lead to feelings of isolation. Friends and family may not understand the severity of the disease, especially when the symptoms aren’t outwardly visible. This lack of awareness can be invalidating and contribute to a sense of loneliness that’s common among autoimmune disease patients.

Navigating Treatment

There is no cure for Sjögren’s syndrome. Treatment focuses on managing symptoms and preventing complications. Eye drops, saliva stimulants, and immunosuppressive drugs can help, but they often come with side effects and don’t always provide relief. Patients must also make lifestyle changes—managing stress, getting adequate rest, and avoiding triggers—to maintain stability.

What’s especially difficult is the trial-and-error nature of treatment. What works for one person may not work for another. Patients often become their own advocates, researching, tracking symptoms, and pushing for the care they need.

The Need for Awareness

Greater awareness and education about Sjögren’s syndrome and autoimmune diseases are crucial. Medical professionals need better tools and training to recognize these conditions early. Friends, families, and employers need to understand that these illnesses are serious—even if they aren’t visible. And patients need more support: through research funding, access to specialists, and community networks.

Living with an autoimmune disease like Sjögren’s is a daily act of resilience. Behind the dry eyes and tired smiles are people fighting battles most will never see. The more we understand, the better we can support those living with these invisible, but very real, challenges.

 

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Hearth Attack and Genetics!

In truth, the risk of heart attacks is significantly influenced by genetics. An established risk factor is a family history of heart disease, especially heart attacks or early coronary artery disease (CAD). A person's susceptibility to heart attacks can be considerably increased by genetic predisposition, even though lifestyle and other variables also play a role!!!

Among other things, our genes determine our blood type, physical appearance, and even the risk to certain diseases.  Heart disease is a serious issue, as it is the primary cause of death in the US. Is there any chance that your genes are making you even more prone to this fatal medical condition? There is no doubt that cardiovascular risk is inherited, he says. "You are more likely to have heart attack or coronary artery disease if you have a parent or sibling who has the condition." For instance, you are more likely to have a heart attack if your mother had one before the age of 55 or your father has one before the age of 45. The risk of heart disease can be influenced by several biological factors in addition to these inherited genes. For instance, there is evidence that African Americans are more likely to have high blood pressure and diabetes, which may be signs of a propensity to heart failure and coronary heart disease (Sachin Parikh, 2013).

How does a family history of heart disease increase your risk?

Your family history may raise your risk of heart disease in several ways.

1. Inherited Genes: You might have inherited heart disease-causing genes. Though no single gene is responsible for heart disease, several genes can cooperate to raise your risk of getting it. High blood pressure, high cholesterol, and other risk factors can be inherited due to certain genes. 

2.Shared Environments: Additionally, you may inherit shared environments from your family's preceding generation. You might have picked up eating patterns or lifestyle behaviors, including a sedentary lifestyle or a fondness for foods (Heart Foundation, 2024).

There are numerous ways in which genetics can affect the risk of heart disease. From the strength of the blood arteries to the communication between the heart's cells, genes govern every element of the cardiovascular system. One gene's genetic variant (mutation) can influence a person's risk of heart disease. An increased risk of clogged arteries can result from a genetic variant that alters the function of a certain protein, for instance, causing the body to metabolize cholesterol differently. The DNA of eggs and sperm contains genetic differences that are handed down from parents to their children. During development, every cell in a child's body receives a copy of the genetic information from their parents.

The inherited disorders that cause sudden cardiac death and arrhythmias are very well understood. Arrhythmogenic right ventricular cardiomyopathy (ARVC) and hypertrophic cardiomyopathy are both capable of producing fatal arrhythmias. Numerous hereditary conditions can result in arrhythmias and abrupt cardiac death. The more common ones include Atrial Fibrillation, Brugada Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, Long Q-T syndrome, and short Q-T syndrome (University of Ottawa Heart Institute, 2018).

Symptoms of Inherited Cardiovascular Disease:

With cardiovascular genetic diseases, there may be several signs and symptoms that families may not know about. If symptoms do appear, they may include: 

  1. Chest pain
  2. Fatigue
  3. Heart Palpitations
  4. Lightheadedness / fainting
  5. Shortess of breath
  6. Sudden cardiac death including sudden infant death syndrome.

Diagnosis of Inherited Cardiovascular Disease:

Some of the diagnostic tests and procedures include:

  1. Cardiac Catheterization
  2. CT scan
  3. MRI
  4. ECHO
  5. EKG / ECG
  6. Stress Test

Treatment of Inherited Cardiovascular Disease:

Treatment options include:

Lifestyle Changes – 

Medications for Cardiomyopathy and Arrhythmias - 

  1. Antiarrhythmic medications will help control your heart’s rhythm.
  2. Anticoagulants “blood-thinners” will help treat, prevent and reduce blood clots.
  3. Beta blockers will help reduce your blood pressure.
  4. Calcium channel blockers will help relax and open narrow blood vessels, reduce heart rate and lower blood pressure.
  5. Diuretics “water pills” will help reduce the amount of fluid retention in your body.
  6. Gene-Modifying medications and protein stabilizers.

Medical and Surgical Procedures – 

 

REFERENCE:

  1. https://www.henryford.com/blog/2023/07/heart-disease-risk-genes
  2. Heart Foundation. (2024). Know your risk: Family history and heart disease | heart foundation. Heart Foundation. https://www.heartfoundation.org.au/your-heart/family-history-and-heart-disease
  3. University of Ottawa Heart Institute. (2018). Inherited Cardiac Conditions (Genetic Disorders) - University of Ottawa Heart Institute. University of Ottawa Heart Institute. https://www.ottawaheart.ca/heart-condition/inherited-cardiac-conditions-genetic-disorders
  4. Inherited cardiovascular disease diagnosis, symptoms, and treatment. (n.d.). RWJBarnabas Health. https://www.rwjbh.org/treatment-care/heart-and-vascular-care/diseases-conditions/inherited-cardiovascular-disease/

Photo by engin akyurt on Unsplash

Why Underestimating Asthma Can Be Dangerous

Asthma is one of the most common chronic conditions in the world—but also one of the most underestimated. As a clinical research coordinator, particularly in severe asthma trials, I’ve seen firsthand how dangerous this mindset can be.

Many patients with asthma end up in the hospital multiple times a year, requiring more than just inhalers or breathing treatments. When symptoms don’t improve, they often need systemic steroids to reduce inflammation. While these medications can be life-saving, repeated use comes with serious risks.

Systemic steroids can suppress the immune system, increasing the risk of infections such as pneumonia, fungal infections, and shingles. Long-term use can also lead to complications like osteoporosis, high blood pressure, adrenal suppression, mood changes, and even episodes of psychosis.

Asthma Requires Daily Attention

If you have asthma, it’s essential to understand that it’s a chronic condition—even if your symptoms only appear occasionally. Many people assume they’re “fine” because they only wheeze once in a while, or because they've gotten used to living with symptoms like nighttime coughing, shortness of breath, or relying frequently on their rescue inhaler.

But just because a certain level of discomfort has become your "normal" doesn’t mean your asthma is under control.

One of the biggest misconceptions is that asthma only needs treatment when it's flaring up. In reality, daily management is key. That includes using your daily controller inhaler exactly as prescribed. A rescue inhaler is meant to relieve acute symptoms. A controller (daily) inhaler is intended to keep your airways stable and prevent those symptoms from occurring in the first place.

You should never stop taking your daily inhaler just because you feel better—only your healthcare provider can determine when it's safe to discontinue it.

What I See in Clinical Trials

When patients enroll in severe asthma clinical trials, one of the first assessments we perform is a pulmonary function test to measure lung capacity. This test requires participants to exhale forcefully and inhale deeply—sometimes to the point of exhaustion, especially for those with poorly controlled asthma. Many describe it as feeling like they’re drowning and trying to catch their breath.

As research professionals, this is one of the hardest parts to witness—watching patients struggle simply to breathe. But these assessments are necessary. If a patient meets the required lung function criteria, we can offer investigational treatments, such as biologics or new inhalers, that may significantly reduce the frequency and severity of their asthma attacks. That is always our goal: to help patients live better, safer lives.

Don’t Wait for a Crisis

Asthma is manageable—but only when it’s treated with the seriousness it deserves. Don’t wait for a crisis to start following your doctor’s instructions. Every skipped dose, ignored symptom, or postponed check-up adds to the risk.

The most dangerous thing about asthma is how unpredictable it can be. It often starts with something subtle, like mild chest tightness, and can quickly escalate. In many of the cases I’ve seen, patients ended up in the emergency room because they underestimated their symptoms. And nearly every time, they thought they were doing "well enough."

But asthma control is not about surviving—it’s about thriving. It’s about being able to breathe without effort, sleep through the night, and participate in daily life without limitation.

Final Thoughts

If you live with asthma, please don’t minimize what you’re experiencing. Talk openly with your provider. Follow your asthma action plan. Use your inhalers as prescribed—both daily and as-needed.

Asthma may be common, but that doesn’t make it harmless. You deserve to breathe easily, and it starts with taking your condition seriously.

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Iron…. Get your iron…. Iron…. Don’t forget to read all about it

Have you ever felt overly exhausted, weak, or like even the smallest task makes you lose motivation and at the end of it all you are left as a couch potato? It’s possible you may be struggling with iron deficiency.

You might say, “Well, wouldn’t my doctor have already told me if I was iron deficient?” Not necessarily.

While iron deficiency isn’t new, it can be surprisingly difficult to detect. The easiest form to spot is iron deficiency linked to anemia (AID). However, non-anemic iron deficiency (NAID) can be much harder to recognize. There is a widespread misconception that you’re only iron deficient if you are anemic, but research shows this is not the case. Due to this misunderstanding, 1 in 4 providers can misinterpret iron levels in lab results, around non-anemic iron deficiency.

Iron deficiency, with or without anemia, can cause various issues such as fatigue, brain fog, and other cognitive impairments.

“Tens of millions of people in the U.S. are basically running on fumes either because there isn’t enough fuel in the tank or because the tank isn’t connecting to the engine well.”

What is iron deficiency and why does it affect me so much?

Iron plays a key role in how our hemoglobin functions. Hemoglobin is a specific protein found in red blood cells. This protein is crucial for carrying oxygen to the rest of our body. Without enough iron, hemoglobin production drops. With a drop in hemoglobin your body delivers less oxygen to vital tissues and organs. That lack of oxygen often presents itself as fatigue.

You’re not alone

Don’t worry, you’re not the only one dealing with this. Approximately 70% of the high-risk population for iron deficiency goes undiagnosed. Iron deficiency seems to be extremely common in the general population of people who are seemingly healthy and non-anemic. This group can generally be split into two categories:

The most affected groups, based on research, include people of female sex, African American, and younger patients. Due to the lack of recognition, there’s a large gap in treatment for this condition.

What can you do?

First and foremost, consult with your doctor. Share any signs or symptoms you’ve noticed and request testing for your ferritin levels, which are commonly associated with diagnosing non-anemic iron deficiency.

Also, understand what fatigue can actually look like it’s not just being tired. Symptoms may include:

The listed symptoms are just a few of those correlated to fatigue.  Keep in mind that even if you don’t check every box, you may still be iron deficient. It’s essential to consult your doctor and advocate for testing.

Treatment and Diet

If you are diagnosed with iron deficiency, it is important to know what treatments are available to you. Treatment usually begins with oral supplements. If oral supplements are not effective, doctors may recommend IV iron infusions.

Another way to reduce your risk or support treatment? Watch what you eat. Research shows that people on vegan or vegetarian diets are at higher risk for iron deficiency.

Here are some iron-rich foods to include in your every day diet:

Final Thoughts

Iron deficiency is more common than people realize and too often, it goes unnoticed. Don’t wait for symptoms to take over your life. Inform yourself, know the signs, and advocate for the right tests and treatment. Whether it’s adjusting your diet, taking supplements, or pursuing medical treatment, you deserve to feel like yourself again.

References 

  American Society of Hematology. (2024, April 12). Over half of iron deficiency cases in large health system still unresolved at three years. https://www.hematology.org/newsroom/press-releases/2024/over-half-of-iron-deficiency-cases-in-large-health-system-still-unresolved-at-three-years

  Bruikman, C. S., DeLoughery, T. G., Mebius, M. M., & Swinkels, D. W. (2024). Iron deficiency resolution and time to resolution in a large health care system. Blood Advances, 8(23), 6029–6038. https://doi.org/10.1182/bloodadvances.2023011633

  Bendix, A. (2024, May 9). Iron deficiency in adults is more common than previously thought, study finds. NBC News. https://www.nbcnews.com/health/health-news/iron-deficiency-adults-higher-expected-study-rcna172246

  Camaschella, C. (2020). Iron deficiency. The New England Journal of Medicine, 372(19), 1832–1843. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7588396/

  Better Health Channel. (n.d.). Fatigue. State Government of Victoria. Retrieved June 6, 2025, from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/fatigue

 

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Southwest Clinical Research at Family Fit Fest 2025

On April 26, 2025, Southwest Clinical Research proudly participated in the Family Fit Fest, a vibrant community event dedicated to health, wellness, and family fun. The event brought together local businesses and organizations to showcase their products and services—and we were thrilled to be part of it!

Our booth offered free glucose checks and blood pressure screenings, helping attendees take a proactive step toward better health. Visitors also enjoyed our interactive games, including Spin the Wheel, Mini Trivia, and a Raffle Draw with exciting prizes.

It was a great opportunity to connect with the community, answer questions about clinical trials, and raise awareness about the research we’re doing to advance medical care.

Check out some of the highlights below!

We’re grateful to everyone who stopped by and look forward to seeing you at future events!

Interested in participating in a clinical trial? Learn More Here

Let’s Talk About Depression

Hey everyone,  

Let’s get real for a minute. Depression. It’s one of those topics that feels heavy, uncomfortable, and maybe even a little taboo to bring up. But here’s the thing: it shouldn’t be. Depression is a part of so many people’s lives, whether it’s their own experience or someone they care about. So, let’s talk about it—openly, honestly, and without judgment.  

First off, depression isn’t just “feeling sad.” It’s not something you can snap out of with a pep talk or a good night’s sleep. It’s a complex mental health condition that can affect every part of a person’s life—how they think, feel, and function. It’s like carrying an invisible weight that no one else can see, but you feel it with every step you take.  

And here’s the kicker: depression doesn’t discriminate. It doesn’t care how old you are, what you do for a living, or how “perfect” your life looks from the outside. It can show up uninvited and stick around way longer than anyone wants it to.  

But here’s what I’ve learned over the years: talking about it helps. It doesn’t “fix” everything, but it takes away some of the power that stigma and silence hold. When we share our experiences, we remind each other that we’re not alone. And that’s huge.  

If you’re struggling with depression, please know this: it’s okay to not be okay. It’s okay to ask for help. It’s okay to take things one day—or even one moment—at a time. You don’t have to have it all figured out, and you don’t have to face it alone.  

And if you’re supporting someone with depression, remember: sometimes the best thing you can do is just be there. Listen without judgment. Offer kindness without expecting them to “get better” on your timeline. Your presence matters more than you know.  

Let’s normalize talking about mental health. Let’s check in on each other, not just when things seem “off,” but regularly. Let’s create spaces where people feel safe to say, “I’m not okay,” without fear of being misunderstood or dismissed.  

Depression is tough, but so are we. And together, we can make it a little less lonely.  

 

Take care of yourselves, and each other.  

 

With love,  

Chika Mordi

research@swmedicalgroup.com

469-893-1242

 

P.S. If you or someone you know is struggling, please reach out to a mental health professional or a trusted support line. You’re worth it.

 

Lipoprotein(a), Heart Health, and Taking Control

When it comes to heart health, we’re all pretty familiar with terms like LDL (bad cholesterol) and HDL (good cholesterol). But have you heard of lipoprotein(a), or Lp(a) for short? If not, you’re not alone—this little-known particle is gaining attention in the medical world for its significant role in cardiovascular risk.

So, what exactly is Lp(a)? Think of it as a cousin of LDL cholesterol but with a bit of a troublemaker streak. Like LDL, it can contribute to plaque buildup in your arteries, but it’s even sneakier because its levels are largely determined by genetics. Unfortunately, no amount of kale smoothies or hours on the treadmill will reduce it.

LDL cholesterol

Why Should You Care About Lp(a)?

High levels of Lp(a) can increase the risk of heart attacks, strokes, and aortic stenosis (a narrowing of the heart’s main valve). The tricky part is that most people don’t even know their Lp(a) levels until something goes wrong. Routine cholesterol tests don’t check for it. You need a specific test, and if you have a family history of heart disease, it’s worth asking your doctor to check it out.

Here’s the good news:

Even if your Lp(a) levels are high, there are plenty of things you can do to lower your overall risk.

1. Know Your Numbers: Knowledge is power. A simple blood test can reveal your Lp(a) levels, giving you the information you need to make smart decisions about your health.


2. Healthy Lifestyle Choices: While lifestyle changes won’t directly lower Lp(a), they still protect your heart. Focus on heart-healthy eating, regular exercise, stress management, and getting quality sleep.


3. Control the controllables: High blood pressure, diabetes, and smoking all increase heart risk—regardless of your Lp(a) status. Managing these factors can go a long way.


4. Emerging Treatments: The medical world is buzzing with research on therapies specifically targeting Lp(a). At Southwest Clinical research we are at the forefront of enabling this possibility with cutting edge research to proffer state of the art solutions.

Lp(a) is like that one surprise guest at the heart health party—unexpected but not impossible to deal with. Staying proactive, informed, and connected with your healthcare provider is the key. Your heart works hard for you every day. Taking control where you can and staying aware of what’s on the horizon can help keep it strong for years to come.

To find more about this or to continue the conversation please call 469-893-1242 or email research@swmedicalgroup.com