We continued our series on Lyme disease during the month of March, and we began a new series on Ehlers-Danlos Syndrome (EDS) … throwing in for good measure in-between an interview with Lauren’s health practitioner, Dr. Lisa Hunt. If you’ve wondered what functional medicine is really all about, Dr. Hunt explains it all!
Like many Lyme sufferers, psychotherapist Christina Kantzavelos (@buenqamino // @beginwithintoday) went many years with increasingly debilitating but undiagnosed symptoms. Lyme can be insidious, and is known as the “Great Imitator” because its symptoms mimic many other diseases. Although she is still on the road to healing, Christina has made a conscious decision to choose thriving over an obsession with surviving. She follows both Eastern and Western modalities, and has made major changes in nutrition and her daily environment. An expert in self-care, she has also created the symptom tracker we love, the Begin Within Today journal.
Here is Christina’s advice, in a nutshell: “Prior to getting really sick, I had a tendency to ignore what I was feeling. If my body was telling me to stop or not do something, I would push right through. I’ve learned the hard way that you just can’t do that.” Sound familiar? A listen to Buenqamino will hopefully help keep your healing goals in sight!
In her search for diagnoses and help with her healing, Lauren found Dr. Lisa Hunt — and the world of functional medicine. Not only does Dr. Hunt continue to guide her in her wellness journey, she has found in her practitioner emotional support and an unwavering validation of how she is feeling through the ups-and-downs. Functional medicine practitioners target root causes and treat their patients with supplements and natural methods, paying close attention to the ways symptoms vacillate and tweaking treatments every step of the way. Board certified in both Family Medicine and Holistic and Integrative Medicine, Dr. Hunt has 20 years of experience as a family physician, and in her interview, she provides a primer on integrative health.
“I always want to instill hope in my patients. My job as your physician is to empower you with knowledge so that you can decide what, intuitively, is best for you,” she explains. Thank you, Dr. Lisa Hunt!
Growing up, Sharon Leggio Falchuk can’t really remember a time when she felt well. She was plagued by digestive issues — and told, “you just have the family stomach.” By second grade, she was suffering from migraines, neurological visual problems, “and lots of weird aches and pains”. Much of her childhood was spent in and out of emergency rooms, where her parents were always told their daughter must have caught a virus or a bug of some sort. Along the way, however, one doctor (out of the dozens she saw) tried cranial sacral therapy, which gave her much relief, and changed her perspective on health and wellness.
By 2011, when she found herself bedridden and the mainstream medical system had no answers or help for her, she took matters into her own hands — doing research, changing her diet and lifestyle, and assembling a functional medicine and alternative care team to help her forge a path to healing. Flash forward … Sharon has become a Functional Medicine Certified Health Coach, where she specializes in helping people with “mystery illnesses” and chronic conditions!
Sharon’s journey reads like a can’t-put-down book. But we particularly love this story she told us …
“I’m Sicilian-American, and super obsessed with my culture. I’ve done a ton of ancestral research, and I’ve learned cultural dances. And I learned that the tarantella, the traditional Southern Italian dance, was taught or was used to heal from the bite of a tiny spider. When I was in class with the folk teacher, and she was telling the story of the significance … I started crying. I’m like, ‘You don’t understand. I’m here because I have Lyme disease, and I’m here to do his cultural dance that’s supposed to heal you from the bite of a spider!’ It was just so powerful. And then she explained that after a while, it wasn’t really believed that it was for the bite of a spider. It was that women felt so oppressed that they were in this state …”
We concluded our series on Lyme with Rhisa Parera, whose mission is to break down the stereotypes about Lyme among people of color, and to bring attention to how so many BIPOC are misdiagnosed, go undiagnosed, and often spend their whole lives at the mercy of a biased medical system. Rhisa has experienced first-hand the misconceptions and downright ignorance displayed toward POC; she has heard the comments about the absurdity of Black folks getting Lyme disease, for instance … “There are no ticks in the projects!” … and how so many Black women are diagnosed with lupus without an investigation into the possibility of Lyme infection.
Afro-Latina, Rhisa grew up as an active young woman in Staten Island, NY, and got heavily involved in the salsa dancing scene and modeling from her late teens into her early twenties. At the age of 19, her health took a serious downward turn; and ten years later, aged 29, she had deteriorated to the point at which she was no longer able to participate in activities that had once brought her joy and connection to her heritage.
Multi-symptomatic with serious health issues, Rhisa continues her health journey, sharing her story, and urging chronic illness sufferes to find community. “Even when you have an advocate, or family or friends who are there for you, it’s different — because they can only understand so much,” she points out. “You want to find a community that knows exactly what you’re talking about.”
In March, we also began a series on EDS, a rare condition described by the international Ehlers-Danlos Society: “The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.”
We are proud to have begun our series with two phenomenal guests. First up, 25-year-old Shayla Swint, self-described EDS Zebra Warrior! We should explain here that the EDS community uses the zebra as its mascot in an effort to educate healthcare practitioners that just because you hear hoofs, it does not have to be a horse … it may well be a zebra! We love that image!
Even though Shayla is young, she still spent many years searching for a diagnosis, and had virtually given up when one rheumatologist told her, “It can’t be EDS. Black people don’t get EDS.” Crawling back into herself at this insult, she convinced herself she should stop looking for a validating diagnosis and that she would just try and manage her pain as best as she could. But she was lifted back up when her mom, a chronic migraine sufferer, got her into therapy … and when she reached out and found EDS support online. This has led her to advocacy!
“I’m part of an EDS support group, and they are absolutely amazing. I’ve met some really great people. But in the support group, there’s not a lot of people that look like me at all. Sometimes, I think, I cannot be the only Black girl in America with EDS. I just can’t. So that’s why I started to be a little more forward on my social media platform. I’ve found a few people, women of color, who are suffering with it as well. And we’ve had a chance to connect and bond and just share that same journey with each other.”
Next, we then welcomed Julian Gavino, trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and co-morbidities. You may also know Julian as @TheDisabledHippie.
Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people.
Julian’s EDS symptoms began at age 5, when he remembers, “Even at night, every night before I went to sleep, I told my mom that I was afraid I was gonna die in my sleep.” Many years later, when he was finally diagnosed, there came a certain relief. “I don’t have definitive answers on what’s causing this,” he says. “But I still feel so much more comfort than I used to. Because it’s tangible to something.”
A rare, debilitating disease … often confined to a wheelchair … transitioning from female to male … putting himself in the spotlight when it comes to advocacy …
There have been so many hurdles for Julian, but his strength is unwavering and his focus strong. “Mostly, I aim for talking about things that people don’t want to talk about, or that they’re not used to talking about. With a lot of minority communities, we have these specific narratives that get told over and over again. So, I like to work changing that up a bit. And really getting down to those intersectionalities, getting down to the stuff that we don’t talk about often. And it’s stuff that people are not used to seeing, or that might make them uncomfortable. But it’s important. That’s how we learn. And that’s how we grow.”
It has been quite a wonderful month at Uninvisible Pod. We invite you to take a listen to some pretty darn remarkable people!