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Being Proactive as an Autoimmune Patient

This session featured the Autoimmune Community Summit’s keynote speaker, Lauren Stiles of Dysautonomia International. Lauren was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in the hospital after experiencing a concussion. Hear about Lauren’s journey and how she channeled frustration into advocacy.

Recorded October 2021 at the Autoimmune Community Summit.

A bit about POTS

POTS is a common type of dysautonomia – a class of conditions that affect involuntary functions in the body like blood pressure, heart rate, digestion, and other organ function.

POTS is “grossly under-diagnosed and under-recognized because most doctors have not received training on how to diagnose and treat autonomic nervous system disorders.” Eighty-five percent of POTS patients are female, and while it is underdiagnosed, it is not rare.

Delayed Diagnosis and Co-morbidity

Patients go through very long diagnostic delays with POTS and there is a high rate of autoimmune comorbidity with the disease. Lauren and Dysautonomia International have seen lots of Sjögren’s Syndrome, Hashimoto’s, and other autoimmune conditions overlapping with POTS. Some research suggests POTS itself is an autoimmune disorder, “but we’re not quite ready to say that”.

A link between Autoimmune and Dysautonomia?

There are a lot of autonomic disorders that overlap with autoimmune disorders. Symptoms commonly experienced by autoimmune patients such as light-headedness, low blood pressure, tachycardia or intestinal dysmotility – these are all regulated by the autonomic nervous system.

Lauren’s history

“I had this long list of diagnoses, some of which were pretty serious that were beyond POTS. I was a healthy person before (my) concussion then all of a sudden it was like a snowball effect”.

Diagnosis took a long time (there are few neurologists who specialize in dysautonomia), but eventually she was diagnosed with Sjogren’s Syndrome.

Autoimmune patients, much like dysautonomia patients, can have problems with any number of body systems. “So, in my case”, said Lauren, “my theory was that Sjogren’s was causing almost all of this. It was almost reassuring to know that I didn’t actually have 40 different medical problems, I had one that was causing all of these systemic effects.”

Treatments that worked for Lauren

Lauren had success with intravenous immunoglobulin (IVIG) therapy. “It took me from bedridden to ice skating after three infusions. My small-fiber nerves actually grew back, which is pretty amazing”. She eventually switched successfully to subcutaneous immunoglobulin injections, which she suggests patients ask their doctors about.

She also did Vagal nerve stimulation, which is somewhat standard for Sjogren’s and POTS, but it helped her a lot and believes it is worth investigating for autoimmune patients.

Lauren also maintains an anti-inflammatory diet, commits to regular exercise, sufficient sleep, and stress management. Her philosophy is that if she can keep her body healthy, flares will happen in the healthiest environment possible.

“For any autoimmune patients who are on high dose IVIG, I would strongly encourage you to talk to your doctors about trying high-dose subcutaneous immunoglobulin especially if the IVIG gives you headaches and side effects.”

Channeling Frustration into Advocacy

The delays in diagnosis and frustrations with treatment can wear patients down. This is why Lauren turned her efforts towards advocacy. She launched Dysautonomia International in October of 2012. “We started at my kitchen table and we have grown to a community of about 100,000 members”. The community is growing more quickly as a result of Covid since some people who contracted Covid-19 have developed dysautonomia in the aftermath.

“When I was diagnosed, a physician actually told me, you’re never going to meet another patient that has this and you’re never going to meet a doctor who knows how to treat this, which I took as a personal challenge. October is Dysautonomia Awareness Month, which is something we initiated in 2012, and our patient and caregiver volunteers organize events and awareness activities in hundreds of cities around the world each October”.

As her expertise in the field grew, Lauren began contacting researchers and suggesting research ideas. “And much to my surprise, it worked!” Lauren has co-authored several research publications and despite having a degree in law rather than science has been granted a position at Stony Brook University School of Medicine as an assistant professor in neurology.

“Collaboration amongst the researchers and the patient organizations is key, and the autoimmune Association does a great job of bringing the different patient organizations together”.

Closing advice

“You’re more than your disease, I think it’s really important to remember that especially when you’re really sick. It can feel like your diseases are just overwhelming your life but try to find something that is outside of the sick life, whether it’s a hobby or your faith or your family or just something to focus on other than dealing with really debilitating symptoms all day”.

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