Alissa Johnson is a mom and an expert in public health policy. After several years working with state legislators and legislative staff on a variety of issues, Alissa started her own consulting firm, Johnson Policy Consulting, with a special interest in advancing policy solutions to promote the health and wellbeing of children and families in areas like newborn screening, heritable disorders, and insurance discrimination.
In 2019, a complex illness dramatically altered the life of her 11-year-old daughter, Louisa. In that moment, Alissa became the parent for whom she had worked to support for so many years.
“Following my professional experience, it was just astonishing for my child to become ill overnight,” Alissa said. “I had an even greater understanding and empathy for the parents who would testify to legislative committees on the horrific changes that occurred in their children that led to severe disability or death.”
Louisa, affectionately known as “Lulu” by her friends and family, was a happy, healthy, extremely social, straight A student who danced and played guitar. In second grade, Lulu had an abnormally high heart rate (tachycardia). By 6th grade, this condition progressed from being concerning to keeping her from simply walking alone in school at times, let alone running the bases in a softball game. Halfway through 6th grade, Lulu had a different body: an infection impacted her body’s ability to regulate normal functions (dysautonomia). Lulu’s heart rate swung between extremely high and extremely low, she had severe gastrointestinal issues and wasn’t eating, she had no energy, and ultimately her severe pain and difficulty swallowing led to hospitalization. Numerous tests were administered, and everything came back normal. After a week, Lulu returned home. A week later, Lulu was back in the hospital for another week. Following the second hospital stay, Alissa went to her pediatrician to address Lulu’s persistent sore throat. This test came back positive for strep throat. Just a few months later, following a flare-up of neuropsychiatric symptoms, Lulu had a diagnosis of PANDAS.
Understanding PANS/PANDAS
Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) are conditions that often affect children, causing a sudden onset of obsessive-compulsive disorder symptoms, severe anxiety, headaches, joint pain, and other neuropsychiatric symptoms. These conditions are thought to be triggered by an immune response to infections, such as strep throat or other environmental factors. PANS/PANDAS can significantly impact a child’s life, causing challenges – often severe – in daily functioning and emotional well-being.
“I really cannot express how extremely isolating and horrific the conditions of PANS and PANDAS are,” Alissa shared. “For many of the parents, the only refuge they have is the community of other families who are going through these unbelievable life circumstances.”
While there are established guidelines for PANS/PANDAS treatment, significant barriers exist, including access to care, clinical diagnosis without a physical biomarker (although, thankfully, researchers are currently working to identify candidates), and physicians’ lack of acceptance of the condition. Without access to proper, holistic care, parents find themselves in an unpredictable cycle of reacting to health changes through hospitalizations and emergency room visits.
“Going to the emergency room with a child experiencing such a complex illness like PANS/PANDAS can be really disappointing, frustrating, and sometimes frightening. All too often, the children and the parents are treated as though they are criminals,” Alissa revealed. “There is a lack of acceptance of PANS/PANDAS which seems to stem from a lack of understanding amongst the medical community. But rather than being curious and asking, ‘How can we help this child who is clearly suffering but we don’t understand it?’ Rather than wanting to dig in and say, ‘How can we improve the life of this child and this family?’ Instead, there is a tendency to blame the child and blame the parent. When physicians resist accepting these realities, it just leads to more pain and suffering beyond the pain and suffering you are already experiencing at home. It’s excruciating.”
Parents often describe teachers, doctors, caregivers, and other authorities blaming the parents or the child for the various neuropsychiatric symptoms.
The Power of Community to Drive Research
Alissa admits that she was fortunate to have resources, domain expertise, and a network of professional connections – even within her own family – that she could leverage to access care. Even then, she faced extremely challenging circumstances.
“Most hospitals will not accept these patients. Even in some highly regarded institutions, when my daughter was in complete crisis, we were told to go home and consult with a care team,” Alissa shared. “With a child that sick, even with the resources we had, it’s very difficult to get in a car and drive two states away. For single parents, people living in rural communities, families with multiple sick kids…the situation is near impossible, and we need to help them.”
“I don’t think there is a way for anyone to truly understand how devastating the circumstances are under which the children and their families are living unless the PANS/PANDAS patient community shares that with others. The most critical people who need to understand are researchers and physicians”.
Fortunately, there are growing opportunities to unite a collective voice of the community and expand research.
“Luna and Genetic Alliance provide a unique opportunity for families to engage with researchers to share their experiences, aid in raising awareness, and advance science so that we can hopefully allow these kids to go on to live healthy lives, “ Alissa said. “The great attention to privacy protection of the information patients share is really important.”
The Road Forward
In July 2021, Lulu died at 14-years-old of complications from PANS/PANDAS. Her parents founded the Louisa Adelynn Johnson Fund for Complex Disease to support the efforts of researchers studying the conditions from which Louisa suffered, including dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), neuroimmune disease, and other comorbidities. Subsequently, Alissa joined Amanda Peel Crowley and other parents as co-founders of the National Alliance for PANS/PANDAS Action (NAPPA), a coalition which serves as a lobbying group to increase federal funding for PANS/PANDAS research. On March 23, 2023, Amanda testified on Capitol Hill to Congress about the critical need for federal funding for PANS/PANDAS, and shared some of Lulu’s story.
“What motivates me to continue to be involved in the PANS/PANDAS community is that it’s just unconscionable that this continues to go on, and so many children are affected,” Alissa said. “There is not yet reliable epidemiological data, but we know there are a significant number of families out there and, even if there were only one, we cannot accept them being continually ignored and mistreated.”
Resources and More
Alissa Johnson, Principal Consultant, Johnson Policy Consulting
www.policyconsult.com
The Louisa Adelynn Johnson Fund for Complex Disease
www.tlajfundforcomplexdisease.com
The National Alliance for PANS/PANDAS Action (NAPPA)
www.facebook.com/NAPPANationalAllianceforPANSPANDASAction
info@panspandasaction.org
About Luna
Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data—health records, lived experience, disease history, genomics, and more—for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.
