What is lupus?

Lupus is a chronic autoimmune disease where a person’s immune system (the system that helps fight infections) attacks its own healthy cells by mistake. It can affect different organs of the body, including, but not limited to the skin, joints, heart, kidneys, and lungs. It usually occurs without warning and affects each person differently. Unfortunately, we don’t know the exact cause of the disease, but we know the immune system is involved; genetics, hormones, and the environment also likely play a part.

What are the signs and symptoms of lupus?

Its symptoms can mimic those of other diseases, which is why it’s known as “the great mimicker.” The intensity of symptoms varies and can come and go over time, but the most common include:

• Fatigue
• Fever
• Headaches
• Hair Loss
• Joint pain, stiffness and swelling
• Butterfly-shaped rash across cheeks and nose
• Abnormal blood clotting
• Anemia
• Pain in chest or deep breathing
• Sun or light-sensitivity
• Fingers and toes that turn white or blue when exposed to cold or during stressful periods

Who develops lupus?

Anyone from newborn babies to older individuals can develop lupus. It is most often diagnosed between the ages of 15 and 45 and is more common among African Americans, Hispanics, Asian Americans, Pacific Islanders and Native Americans.

Lupus is also more common in women.

How is lupus diagnosed?

There is no single test that can diagnose lupus.

Because lupus can present with vague symptoms and mimic other illnesses, it can sometimes take years to make a diagnosis. Medical history, symptoms, and various tests can help make the diagnosis. Instead, diagnosis is based on criteria that includes clinical findings and laboratory tests. Helpful tests look for autoantibodies (antibodies that attack a person's healthy cells) that are often found in the blood of lupus patients. As the kidneys are often affected by lupus, a kidney biopsy is also useful.

How does lupus affect the kidneys?

When the immune system attacks the kidneys, it leads to inflammation of the kidneys. This stops the kidneys from working properly to remove waste and toxins from the body. Patients may not have any symptoms but may notice darker, bloody urine or swelling in different parts of the body. An abnormal urine or blood test may be the only sign of disease. Because the kidneys are so important to overall health, lupus patients with kidney involvement generally need strong drug treatment to help prevent permanent damage. If permanent damage does occur, dialysis and kidney transplant are needed.

How is lupus treated?

There is no cure for lupus, but there are various treatment options to manage it. Non-steroidal anti-inflammatory drugs, steroids, antimalarials, and immunosuppressants are commonly used. As lupus affects patients differently, treatment varies between patients. One patient may also have to change medications several times during their lifetime as the disease evolves and changes. For patients with kidney involvement, blood pressure medications and stronger immunosuppressants may be needed.

For more information on lupus, visit:

https://kidshealth.org/CookChildrens/en/parents/lupus.html 

http://www.lupus.org/

http://www.lupusawarenessmonth.org/

https://www.lupusresearch.org/

Count your many blessings. See what God has done!"

- Johnson Oatman Jr.

I grew up knowing every word to the song, “Count Your Many Blessings,” but never truly appreciated the powerful message until this past summer.

Our daughter, Eliza, got sick June 19, 2015. It seemed like a typical stomach bug. But by the next day, we knew something was wrong. She was hospitalized at Lakeside Covenant in Lubbock, Texas a couple days later.

It was there that we received her diagnosis, Hemolytic Uremic Syndrome, or HUS, caused by E coli. They arranged for us to be immediately flown to Cook Children’s Medical Center in Fort Worth.

Three letters: H.U.S – that would change our lives forever.

Eliza’s kidneys began shutting down; she was exhibiting signs of neurological disturbances as well. We couldn’t believe our healthy child was going downhill so quickly. She was transferred to the PICU (Pediatric Intensive Care Unit), where we would spend the next 26 days.

The staff in the PICU started Eliza on dialysis right away. As a mother, it was my worst nightmare, to see my child unresponsive, lying on a bed with multiple machines keeping her alive.

Eliza wasn’t following the normal progression of HUS. She began having seizures, her kidneys still refused to work, she continued to have gastrointestinal bleeding, and was showing signs of extreme pain.

By this point, she had gone through several blood transfusions, plasma exchanges, dialysis around the clock, numerous MRIs, CAT scans, EEGs, and EKGs. She had a whole team of doctors and they were all stumped. We were constantly told that she wasn’t their typical HUS patient.

Thankfully, Eliza’s nephrologist, Dr. Jennifer Willis, kept researching and questioning Eliza’s unusual symptoms. This would eventually save Eliza’s life. She suspected Eliza not only had HUS, caused by E coli, but also atypical HUS, a genetic disease.

She approached my husband and I about running a genetic test on Eliza to confirm the atypical HUS diagnosis, but the results would take up to 8 weeks. In the meantime, she wanted to try a medication called Soliris. She warned us that it was very expensive and she was not sure if insurance would cover it.

We continued to pray, we asked for prayers, and decided it was worth the risk. We just wanted our Eliza back! This was the first moment I truly realized we might lose our precious baby. We had been so hopeful and optimistic the entire time, but my hope was gone. I pleaded with God to be with Eliza and her medical team and save her life.

He answered my prayers and the prayers of many who were praying all over the world for her. Dr. Willis was right, after two doses of the medication, we began to see dramatic improvement. Eliza woke up, began talking, and progressed more and more every day.

Fifty days after exhibiting her initial symptoms, we were released from Cook Children’s. During Eliza’s summer at Cook Children’s we became friends with all the employees. We knew the PICU nurses, the receptionists and Eliza’s specialists.

Cook Children’s became our home. Eliza now looks, sounds, moves, and plays like a normal 2 year old. The syndrome, atypical HUS, has long-term side effects on some of her organs.

Currently, Eliza’s kidneys function at 60 percent. She is on multiple medications for both seizures and high blood pressure. The atypical HUS diagnosis was correct, as genetic tests eventually confirmed. Eliza receives a Soliris infusion every other week. Our sweet girl is a model patient. She jumps on the scale, stands to get measured, picks an arm for the blood pressure cuff, and watches while her port is accessed.

We owe so much to all the wonderful doctors, nurses and staff at Cook Children’s, as well as family, community, and the countless people praying for Eliza.

Is it a normal life? No, but it is her life and we thank God every day.

“Count your blessings, name them one by one. Count your many blessings, see what God has done.”