For multiple generations, Katriana Meiman’s family has been dealt challenge after challenge, grappling with a rare medical issue. Both her grandmother and her mother would encounter waves of fatigue and lethargy, often lasting weeks or months on end. When Katriana began suffering from similar symptoms at age 12, her mother decided that enough was enough. She pored over research and reached out to every doctor she could — but the biggest challenge was getting them to simply listen and actually take the family’s medical concerns seriously.
Now, thanks to an experimental treatment and a team of physicians willing to think beyond the narrow disease model, Katriana has been able to receive accommodations that allow her to participate, and excel, in everyday life. Her experiences have motivated her to help others dealing with the same condition. It is her sincere hope that they find not just a care provider willing to actually treat them, but also someone willing to tell them that their struggle is real and that it matters.
This passionate, and compassionate, story is what motivated us to select Katriana as our 2022 Auger & Auger Disabled Scholarship recipient. We are confident that her dedication to helping others and her love of knowledge will propel her to accomplish great things through both large and small acts of unyielding love.
A Victory in Getting Doctors — And Her Own Body — To Listen
Katriana grew up in a family where health problems had the potential to disrupt everyday routines for weeks at a time. Her maternal grandmother and her mother both endured periodic bouts of fatigue that would take weeks or even months to subside. Her mother’s resting heart rate would spike, and meanwhile, her blood pressure would be mysteriously low. Doctors routinely were unable to directly address these symptoms, and some even dared to theorize that it was because the symptoms were psychological, not physiological.
When Katriana turned 12, she began to experience symptoms in a similar vein.
While eating dinner, I was hit with an intense wave of dizziness and nausea that knocked me off my chair. While I had always been a healthy and active child, for the next three months, I could not raise my head from the pillow for more than a few seconds without passing out. My stomach revolted at solid food; I had multiple migraines a week; my joints ached for no apparent reason. At times, my body felt like it was on fire, and I struggled to breathe.
Seeing her daughter suffer, Katriana’s mother put just about every ounce of available daily effort into getting her diagnosed and treated so that she could return to a normal life. Many doctors attempted to hand wave away the symptoms as related to anxiety, despite the fact that they weren’t the result of any specific triggers.
Finally, one neurologist was able to provide a diagnosis: dysautonomia. This rare neurological disorder can disrupt all of the body’s basic functions, including its ability to regulate breathing, temperature, heart rate, blood circulation, and temperature. However, the doctor was unable to provide a concrete cure. Instead, he recommended that Katriana be allowed to rest when her body felt tired. She was also given a medication that helped her to be more comfortable, enabling her to “sit up for a few hours a day.”
While the diagnosis and recommendations were helpful, they were unable to provide Katriana with the life she and her mother felt she deserved. Fortunately, thanks to unyielding efforts, Katriana’s mother fortuitously read a blog post about an innovative programl being run by Harvard Medical School in 2019. The program recommended intentionally triggering symptoms until Katriana was able to force her brain to overcome them — and rewire itself in the process.
“The treatment was torturous, but it worked,” Katriana reflects. “After six weeks, I returned to school full-time for the first time in almost four years –- without medication!”
While her other physicians had recommended that she “listen to her body,” Katriana had finally gained the regimen she needed to get her body — and her doctors — to listen to her.
Spreading the Knowledge That Help Is out There
Like many patients with a rare diagnosis, people with dysautonomia often find it extremely difficult, or impossible, to get the right medical care. In fact, it can be incredibly hard to get people in the medical community to truly care at all. Since the treatments she received are conducted at only one program and are still considered highly experimental, many doctors with dysautonomia patients are either unaware of treatment options or unwilling to recommend them.
Katriana wants to put a stop to that. She states: “My goal is to combine my professional skills and personal experiences to raise awareness of, and access to, the treatments that worked for me. Hopefully, my greatest career accomplishment will be preventing many other patients from ‘losing’ years of their lives to this treatable disorder.”
Many doctors, in her experience, are reluctant to tackle a condition where a patient’s symptoms can’t be easily diagnosed or explained. Since they aren’t used to not having answers, these doctors can become professionally dismissive, telling patients “it’s all in your head.”
In fact, it’s only recently that the medical community has come to appreciate dysautonomia as a cause for concern purely as a result of the pandemic; COVID long-haulers can evidently suffer from a form of the condition.
Katriana’s hope is that people will have access to the treatments and information, as well as the love and support, they need to improve their lives. She wishes to share the things she’s learned so that wisdom can help others.
One example is that she learned that grieving over the things you’ve lost can be a healthy way to cope. Forcing yourself to maintain a positive attitude, without checking in with your sadness, can mean the loss of your ability to grieve becomes a form of loss in itself.
She’s also learned the power of meditation, she says which enables her to tackle whatever goals she is currently facing with a clearer and calmer mind. Another lesson is that our health and our ability to do things like receiving an education are a gift. At the same time, she knows that not everybody can understand the struggles of someone whose biggest challenges are not outwardly visible. Nevertheless, she tries to maintain an upbeat attitude, which she says is contagious and can make challenging situations easier to overcome for everyone.
Finally, her biggest lessons are that “It is important to define happiness in my own terms, rather than by societal conventions” because, no matter how others may feel, “a person is never truly defeated until they either give up or die.”
A Future Caregiver Who Cares
No matter what role future Katriana will someday occupy in the healthcare community, she knows the power that information and access to treatments can have. They make a world of difference in people’s lives.
She says she’s excited to learn more about how the human body works, which will aid her in helping to “develop a better understanding of the causes of and treatments for dysautonomia.”
Above all else, though, she’s excited to live among her peers! Being able to live in the same hall as classmates and friends will provide her with a new world of social interaction and self-discovery.
We are extremely excited about these new experiences, and we have no doubt that Katriana will make a strong positive impression not just on her peers but also on her professors and program administrators alike. Thanks to her deep understanding and the persistent drive of people like her and her mother, future generations will suffer less thanks to having the right people around to treat them —- and to listen to them —- whenever they are in need.