Make sure to check out Part 1 of the Schroeder family’s story before reading further.
Currently, the Schroeder family is doing as well as they can to manage and to ensure that both children have the best care imaginable. They often travel to Boston to the Mast Cell Center of Excellence for care. While Ariana has an easier time with travel, Donovan is much more symptomatic.
Because we started Ariana on treatment at three months old, she is not as symptomatic, whereas Donovan has a lot of difficult days.
The drive to ensure others have the answers to their own health problems empowered Pari to get involved with CURED. When asked why she is so drawn to CURED, Pari says:
CURED was started by a mom on a mission. To get her child and others well. A mother who is fighting for a cure. She’s been on this mission for over twenty years. CURED has donated over 6.5M to research while maintaining being all volunteers. I believe that making change in rare disease, or in healthcare as a whole, takes a village. It takes people wanting to help. We need your help. 100% of the profit from CURED goes to research, so contributing to that is my way of making a change.
Science has not yet caught up to the way diseases intersect or intertwine. Unfortunately, there is a general lack of funding and research within this field. Through the funds raised for CURED, the foundation is working to research how mast cell disease and eosinophilic diseases relate to one another. Pari believes that CURED is invested in looking into the entire cluster of mast cell dysfunction, autonomic dysfunction, eosinophilic conditions, and connective tissue disease.
As part of her advocacy work with CURED, Pari developed a symptom tracker that can be purchased for $5. This tangible resource can track a number of different symptoms and bodily functions, including barometric pressure. Says Pari:
Knowing symptoms, and learning the correct medical terminology for these symptoms, can help you to better communicate with your physician. Keep logs. Track symptoms and patterns. It is important to look at everything in your surrounding environment and how that might influence your disease. If you can taste, smell, or see it, it can be impacting you. Especially with this cluster, I urge people to look at food. Food influences so much and so it can be isolating to struggle with food-related allergies or symptoms.
On the CURED website, you can also find information on eosinophilic gastrointestinal disorders (EGIDs), clinical trial information, formula legislation, K-12 resources, and resources for medical professionals, among others.
Advocating for Medical Improvements
As you may have noticed, one of the resources from CURED is information on formula legislation—more specifically, the Medical Nutrition Equity Act. Pari explains this further, sharing:
Many people with different conditions or allergies need an amino-based formula to support their health. Because it is a ‘formula,’ insurance does not want to cover it even though it is considered medical nutrition. I want to push for federal legislation that covers this because if nutrition isn’t covered, then what is health insurance for?
She also hopes that legislation can address issues in managed care, which Pari describes as the single-handedly worst problem she has ever faced. Her son’s care drastically declined after being placed on a state waiver program. Says Pari:
Rare disease patients do not fit into a box. It is not ‘here is the code and the treatment.’ It’s ‘here is the code, there is no treatment, good luck. We are time consuming, have little treatment options and are not profitable. We often do not fit into typical insurance plans.’ In Texas, institutions can own a Medicaid plan. State waivers are Medicaid. In my opinion, managed care creates this huge injustice to rare disease patients and Medicaid waiver recipients. I will definitely be speaking to my legislators about this. I encourage all tax paying citizens to do the same.
On a more personal level, Pari also works with families on how to optimize their appointments, better communicate with physicians to source their ailment and how to handle diagnosis and treatment that follows. She states:
I work with families for free because I don’t feel like they should be charged for knowledge that is buried deep within medical journals. Not everybody has the capabilities to invest their time and money into research. It takes a village. I am only one small part of that village.
Part of how she helps families is by teaching them how to advocate for themselves and ask for different types of testing. Ensuring that patients are given appropriate testing depends on multidisciplinary care. Pari argues:
When you have multisystem involvement, you cannot have just one physician. That is not justice for the patient or physician. We need multiple specialists with a team approach. This helps prevent costly mistakes. We need medical collaboration and a move towards precision medicine. Treating the patient versus treating the disease.
A more multidisciplinary system, and more informed physicians, can also help combat medical gaslighting. Medical gaslighting occurs when a physician, or multiple physicians, dismiss or downplay symptoms or blame symptoms on psychological factors. Patients with rare disease being refused testing or written off, even when they meet diagnostic criteria, is one example of medical gaslighting.
Advice for Others
Outside of her legislative work and advocacy, Pari also has advice for others within the community—whether they are at the start of their journey or just looking for new ways to get involved. Firstly, she encourages people to find support groups. Rare disease can be isolating; having others who understand what you are going through can be immensely helpful, especially mentally.
Next, she tells people to learn more about their disease, urging them to visit reputable sites and search for articles published in peer-reviewed journals. She shares:
When Donovan was diagnosed, the doctors needed to spell eosinophilic esophagitis. Now we can teach others about EoE. We are our best advocates and it’s important that we are heard.
Finally, Pari encourages people to get involved and get connected in whatever ways they can: waivers, nonprofits, grant programs, joining Rare Disease Legislative Advocates on Capitol Hill. One of the best forms of advocacy, she says, is sharing your story. In the end, Pari shares:
It doesn’t matter if you can only do a little advocacy or a lot of advocacy. Every little bit makes a difference.
If you are facing a rare disease diagnosis, especially one related to the cluster, or would like to learn ways to get involved, Pari would love to speak with you. Please reach out to [email protected] and she would be happy to facilitate that connection.