Mahsa Pazokifard is a seronegative patient. Even though she’s 33 years old today, she didn’t learn about her seronegative status until 2022.

“Being seronegative means that my blood serums are always negative for the diseases and illnesses that I have,” she said. “So even with all of the symptoms I’ve had in my life, my blood continues to show zero indication markers –no antibodies.”

This has played an indescribably significant role in her diagnosis journey with IgG4-RD. A journey that, in fact, has taken the vast majority of her life.

“I was actually born with IgG4-RD but it went undiagnosed until two years ago. I have multi-organ involvement as well as neck and face glandular organ involvement, and they all inflame simultaneously,” she said.

Throughout her childhood, Mahsa repeatedly dealt with fatigue, losing her voice, skin conditions, and much more. As she grew older, she began dealing with increasing anxiety and heart palpitations.

“Whenever something happened and I went to the doctor, they’d ask if this had happened before,” she said. “I’d always say that I was usually healthy because I didn’t know that all of these were actually symptoms.”

When Mahsa was 19 years old, her gut issues began.

“For six years, I was in pain and throwing up every day, from morning til night. I’d go to the ER and they would say I was stressed, I was hormonal, and I was dehydrated,” she said. “They did every test and scan in the book until, six years later, I was at my primary doctor and I started crying. I said, ‘I can’t do this any more. I can’t live like this anymore.’”

That doctor sent Mahsa to a general surgeon who noted that she really had nearly every test done – except for a gallbladder function test. Three days later, Mahsa’s gallbladder was removed, but there were no gallstones in it; instead, it had been inflamed for all six of those years until it lost its function. This removal gave Mahsa instant relief. It certainly did not help all of her symptoms, but it was her first hint of relief after so long. Years later, upon requesting her gallbladder pathology, she found out it was all due to cholangitis, yet another sign of IgG4-RD along her journey.

From 2019 to 2021, Mahsa began to feel the fatigue and joint pain symptoms returning. She elected to focus on her fitness and ultimately lost a significant amount of weight, which helped relieve some of her symptoms. However, she got an infection in November 2021 that lasted more than three months, and led to a wild ride in March 2022.

“I woke up with both eyes puffed shut. The pain was just crazy. I thought it was another infection so I started taking care of it myself, with routines I’d learned, but it didn’t go away. I went to my doctor and she was so concerned that she sent me to an ophthalmologist the same day,” she said. “She actually thought I had multiple sclerosis so she sent me to a hospital, they did scans for MS, and they saw nothing. They ran my bloodwork and checked for antibodies –but it came back all clear, as if nothing was wrong with me.”

Mahsa went home but her symptoms continued getting worse. Around this time is when she finally learned that she’s seronegative, which means that biopsies can often be the best option for a diagnosis. She quickly reached out to the same ophthalmologist and asked for a biopsy.

Through that ophthalmologist, another was referred to her for the biopsy. “When I went to have this biopsy done, I couldn’t walk. I was partially paralyzed, my arms and legs had become very stiff, and I was in bad shape,” she said. “Before the biopsy, the new ophthalmologist asked me what I thought it was. I told him to look for Mikulicz disease, and that it is characterized by its IgG4 plasma cells and patterns. Not knowing what IgG4 even meant, I just wanted the Mikulicz disease diagnosis so I could start treatment for something ASAP! When the pathology came back, it confirmed that there were IgG4-RD patterns and also B- and T-cell infiltrates. It was at the point where I really needed medication or it was going to develop into lymphoma, or something worse.”

Throughout all of those years, the unaddressed primary diseases which now included early Sjögren’s and IgG4-RD caused Mahsa to develop other numerous other conditions, as symptoms. Some of these included: vasovagal syncope, trigeminal neuralgia, dysautonomia POTS, crumbling and decaying teeth, autonomic neuropathy and dysfunction, vertigo, hearing loss, migraines, vasculitis, bronchitis, bronchiolitis, as well as aortitis, parotitis, and more.

“After going through all of this, as much as I love life, I had the feeling that if this is the way that I’d have to live, I don’t want it. So much has been taken from me,” she said. “So I made one decision. I said I was going to give it one good fight, bang down every door, and get the help and treatment that I need. That’s where my fire came from.”

That fire has led Mahsa to today, where she’s one of the leaders of the “Living with IgG4-Related Disease” Facebook group, which includes facilitating Zoom calls for people living withIgG4-RD around the world. She has teamed up with a data health analytics group, Trend Community, and has helped recently launch a new type of research platform called IgG4-RDConnect. To top it off, she has also recently launched a non-profit podcast called “IGg4-RD Life,”with her co-founder and co-host Alex Streczyn. The podcast focuses on being 'by patients, for patients and allies'. She also helps research groups and clinical trials, locate patients in their regions and vice versa, globally. She had to stop working her full-time job due to her disability, so she now dedicates her time to her community.

“As much as your spouse, friends, parents care about you, they can never understand what you’re going through the same way another patient with the same condition can understand you. All of a sudden, it’s like you’re no longer alone,” she said. “It’s like a therapy for me to come to this group and share my experiences. I’m doing advocacy, I’m helping others, but I’m also helping myself.”

As much as Mahsa’s IgG4-RD diagnosis has helped her find medications and at-home remedies that address her symptoms, it has certainly not cured her. Every time she’s due for her next medicine infusion, she has to prove that she’s sick once again because the system relies on blood tests to show indicators. Mahsa, of course, is seronegative so those blood tests actually hurt her case instead of helping.

“My medications and infusions probably takes care of 60% of my symptoms, at-home remedies help with another 25%, and the rest is usually possible to deal with,” she said. Of course, the protocols are constantly changing, and not always the exact same as another IgG4-RD patient.“It’s not easy living with a chronic disease, let alone such a rare disease like IgG4-RD. We need all the help we can get, but also, we the patients can be the help. And I will keep advocating and fighting to share the collective voice of our diverse IgG4-RD community and family.”