Finding a Diagnosis
The night before the birth of her third child, Shira remembers feeling like something was not right. The epidural she received in the hospital didn’t relieve the pain as they had in her previous births. After the birth, Shira suffered from horrible headaches and was so fatigued that she couldn’t move her head off the pillow. “I realize now I was experiencing a lupus flare but didn’t know it at the time.”
Shira visited the ER several days after leaving the hospital, assuming her headaches were caused by the epidural. Doctors in the ER were skeptical of her symptoms, making Shira feel isolated and confused. For the next 2.5 years, Shira went to many specialists trying to get answers for her condition. She recalls feeling like “It was a living hell”. Reflecting on her experience, Shira believes that there were so many missed opportunities to be diagnosed earlier. “If I had been treated sooner, there would have been far less damage to my body. It’s incredibly frustrating.”
Shira’s various symptoms included numbing in both of her hands below the wrist, random shooting aches and pains, extreme fatigue, headaches, and her face swelling. She had to cope with managing these symptoms while struggling to find the necessary medical treatment.
“Lupus can cause ‘brain fog’ and it is very hard to navigate the healthcare system while in the middle of an intense flare-up unable to think straight. Being in so much pain and having doctors not believe me at every appointment made me start to question if my symptoms were in my own head.” Shira started seeing a psychiatrist after being led to believe that her symptoms were psychosomatic.
As months past, Shira’s symptoms continued to increase, and her health continued to decline. On Thanksgiving, two years after her son was born, Shira was so drained she could barely make it up the stairs in her parent’s home and had no appetite for the food that she had waited all year to enjoy. On December 3, 2013, Shira’s symptoms came to a head. “I walked my daughter to her school carpool and came back inside feeling awful and not breathing well. The last thing I remember is getting into an ambulance.”
Shira spent 10 days in the ICU and over a month in the hospital. Her kidneys had shut down and doctors made the decision to intubate her. When she woke up, Shira’s mother and her care team told her they believed she had lupus. “That moment was such a relief for me. I finally had answers and my doctors finally believed me.”
Living With Lupus
Shira began treatment for lupus while in the hospital. She was started on a high dose of steroids, an immunosuppressant, and other medications to treat her lupus flare. Shira was seeing many doctors including a Rheumatologist, Nephrologist, Hematologist, Gastroenterologist and Neurologist. She continued her treatment in an acute rehab and then sub-acute rehab facility for a month where she had to regain her strength and relearn skills she had lost during her hospital stay, like walking and other physical activities. This was a difficult experience for her family, including her children who at that time were 2.5, 5, and 7 years old.
“We needed a lot of help to ensure my children would be able to maintain their daily routines and function physically and emotionally during my treatments. I’m so lucky I had such a strong support system and the encouragement of my family and community during this difficult time.”
After being released from rehab, Shira began readjusting to her daily life while living with lupus. She continued to see Dr. Anca Askanase, the head of the Lupus Center at Columbia Presbyterian and her attending doctor from when she had been hospitalized. She spent the next year attending doctors appointments, outpatient occupational and physical therapy, and trying to find the right combination of medications to keep her symptoms under control. Since her diagnosis, Shira has faced additional complications and hospitalizations. In 2017, Shira was hospitalized for a week with a medication-induced liver injury, which was incredibly unusual considering the combination of medications she was taking. Out of an abundance of caution, her doctor switched her immunosuppressant to avoid further damage to her liver. In 2018, she was again hospitalized when she suffered a seizure and her husband found her unresponsive. Doctors added a seizure medication to her regimen. Over the next year, Shira tried three different seizure medications until finding the right one. At the same time, she began suffering from neurocognitive deficits far beyond her typical lupus brain fog. “I couldn’t understand what people were saying to me anymore, it was scary. I knew I had to advocate for myself because I knew something wasn’t right.” Shira recalls. After requesting to switch her immunosuppressant back to her original medication, her neurocognitive difficulties improved significantly within two weeks. Since her diagnosis, Shira has endured many tests and procedures including a kidney biopsy, two liver biopsies, a spinal tap, EEGs, and numerous MRIs and CT scans.
Shira feels incredibly blessed to have Dr. Anca Askanase as her rheumatologist who trusts that Shira knows her body best and spends time addressing whatever health issues arise.
Drawn to Advocacy
Shira chose to use her experience to become an advocate for lupus patients. “I grew up in a family of activists and attended many political and social protests and rallies. Becoming a lupus advocate was natural for me,” Shira says. She started her advocacy work after seeing a Facebook ad for a lupus summit in Washington D.C. Her experience at this summit was positive, allowing her the opportunity to speak with other lupus patients, share their daily struggles, support each other, and meet with elected officials.
After the summit, Shira became a community ambassador for lupus. She has been invited to multiple speaking engagements and has attended three advocacy conferences. In 2016, she became an annual speaker at Columbia Medical School for second-year medical students.
Clinical Trial Participation
From the very beginning, Shira’s doctors asked if she would be interested in participating in some ongoing clinical research studies related to lupus. These studies involved submitting bloodwork and filling out questionnaires about her health. In more recent years, Shira became more involved in clinical trials. “My doctor recommended I participate in an ongoing trial that was testing whether stimulation of the vagus nerve would reduce the inflammation in the body of someone with lupus. After asking questions and discussing it with my doctor and family, I agreed.” Since her first clinical trial, Shira has participated in several other studies, having very positive experiences with the care team in each study.
Shira was able to combine her passion for clinical research with her advocacy work when she joined PALS as an advocate. PALS is a patient-to-patient educational program that shares information about clinical trials and how to make an informed decision before deciding to participate in one. Along with other patients, Shira was trained by five leading rheumatologists in the field of lupus about the disease, how to answer common questions, and all aspects of the clinical trial process.
“It’s incredible being a part of this group and learning just how many clinical trials and organizations are working to save the lives of people like me.”
When it comes to participation in clinical trials, Shira is motivated to further promote the discovery of new medications and therapies for people living with lupus. She sums up her belief in self-advocacy and working to achieve better medicine for all with a quote from her faith that has guided her throughout her medical journey:
‘If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when?’
– Rabbi Hillel
Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | email@example.com