Cienna Ditri: Persevering Through Paralysis: Finding Strength in Stillness
Cienna Ditri is a rare disease advocate, social media influencer, and president of the Periodic Paralysis Association (PPA). Diagnosed with Periodic Paralysis and a handful of other rare and life-limiting diseases in her early 20s, she uses her platform to raise awareness, educate, and support others navigating life with chronic illness. With her motto, "My conditions are chronic, but my style is iconic," Cienna blends advocacy with self-expression, proving that disability does not define a person’s potential
Photo credit: Danny Garabato
CarrCARE: Thank you so much for joining us today, Cienna. Could you tell us a little about yourself, your background, what you love, and what inspires you?
Cienna: Thank you for having me! I’m Cienna, and I was born with several chronic health conditions, including chronic migraines resulting from hypoxia. These have significantly shaped my life. Despite that, I’ve always loved creating. I’m a content creator, consultant, non-profit president, and surfer. I also receive subcutaneous immunoglobulin infusions as part of my care routine. Living with these conditions affects every aspect of my life, giving me a unique perspective and a sense of purpose.
CarrCARE: Your page name, “Chronically Persevering,” is powerful. What does it mean to you personally?
Cienna: The name came naturally. I was a college student at the time, and even though I was known as “the girl who passed out everywhere,” my conditions had been mostly invisible up to that point. When I returned to university for the fall semester with my new service dog, I realized that my conditions wouldn’t be invisible anymore. That’s when I began sharing my story first through posts about my service dog, because who doesn’t love dogs? Eventually, I opened up more about myself and my health journey. Back in high school, I had received an Award for Perseverance from the Governor of Michigan, and that word stuck with me. It’s been my guiding theme ever since persevering through everything life throws my way.
The Beginning of Your Journey
CarrCARE: When did you first notice that something in your body felt different or challenging to manage? Can you share what it was like discovering you were living with Periodic Paralysis?
Cienna: I first noticed something was off when I was a kid playing soccer. I remember one morning, the grass was wet and dewy, and suddenly it was harder to lift my legs. I just assumed everyone felt like that. But as years passed, the weakness continued. I was in physical therapy, and no matter how hard I tried, my muscles still felt heavy. Blood tests showed low potassium, and eventually, I was referred to the Cleveland Clinic, where I was officially diagnosed with Clinical Hypokalemic Periodic Paralysis. I was lucky to get diagnosed and start treatment pretty quickly.
CarrCARE: What were those early days like, trying to understand what was happening?
Cienna: Honestly, it wasn't very clear at first. I had always lived with the symptoms; now they finally had a name. But having a diagnosis made things easier because I found other people like me who understood what I was going through. I learned life-saving precautions and daily management routines from the Periodic Paralysis Association website. It was about learning the ins and outs of the condition and how to incorporate those strategies into my daily life to achieve a better quality of life.
Living Day-to-Day with Periodic Paralysis
CarrCARE: How have you learned to adapt to life with this condition?
Cienna: My service dogs are my biggest helpers. They can sense an episode 20–30 minutes before it happens, which gives me time to prepare. I also keep rescue medication with me at all times. Staying warm and cozy helps since cold weather can trigger episodes.
CarrCARE: What does a comfortable, good day look like for you? How do you communicate your needs to people who may not understand what you’re going through?
Cienna: On a good day, I can manage independently. My service dog are trained to alert others or get help if an episode worsens. I’m lucky to have friends who truly understand and support me. My friends that I met in high school, and am really close with still have always been terrific tthey know my triggers, like cold weather, and always ensure I am safe. Having that understanding community makes all the difference.
Mental and Emotional Well-Being
CarrCARE: Living with a chronic condition can be emotionally demanding. How do you take care of your mental health?
Cienna: That’s such a good question, and honestly, something we don’t talk about enough. I’ve learned that there’s so much in life I can’t control, but I can control how I react. If I give in to panic, everything feels worse. So instead, I focus on finding moments of joy, even small ones. That mindset always makes my days brighter.
Meditation and biofeedback have helped me a lot, too. My mom taught me to meditate by closing my eyes and imagining I’m on a beach, feeling the sun on my face, listening to the waves. Over time, I learned different mindfulness techniques that really help ground me. Morning and bedtime routines, journaling, and reading also bring me peace.
It’s important to remember: it’s okay not to be OK. Not every day will be sunshine and roses, and that’s perfectly fine.
CarrCARE: Has faith, mindfulness, or community played a role in your healing?
Cienna: Absolutely, especially the community. My family has always believed in me.I do a lot of solo travel as well. Getting to know and love myself solo has been healing and always reminds me that I am my own best advocate.. The support from people who understand, both online and offline, has been life-changing.
CarrCARE: How do you personally define resilience?
Cienna: For me, resilience has always been part of my identity. I’ve faced hypoxia, paralysis, and moments when my body shut down, but resilience means knowing things will happen regardless, and choosing to keep doing what I love anyway.
Advocacy and Awareness
CarrCARE: You use your voice to raise awareness and offer hope to others. What inspired you to start sharing your story publicly?
Cienna: Once I started sharing, I realized that my story could help others. My “why” is hopefully sharing my story to help others feel less alone. If my story can impact and help one other person feel seen and less alone, then I've done it! That always keeps me going.
CarrCARE: How has connecting with others online shaped your journey?
Cienna: It’s been huge. Social media can be complicated, but it's life-changing when you meet people who truly understand your condition. I used to host a virtual book club for people with chronic conditions and disabilities. We met weekly, read together, and shared our lives. Even though most of us had never met in person, we had built such strong connections. It was magical when we finally met at events, like finding family you never knew you had.
CarrCARE: What do you wish healthcare professionals better understood about living with rare or invisible illnesses?
Cienna: I know my condition is rare, and I don’t expect every doctor to know everything. But I do wish more healthcare professionals would listen. My current medical team does that, and it’s made such a difference. They focus on holistically treating the whole person, body, mind, and lifestyle. That’s what genuine care looks like.
Support and Community
CarrCARE: Who have been your most significant sources of strength along the way?
Cienna: My family, friends, and doctors, especially my endocrinologist. She listens, supports, and believes in me. Over time, she’s become more like family. The Periodic Paralysis Association has also been a massive source of support.
CarrCARE: What does community mean to you, both online and offline?
Cienna: It means everything. It’s that reminder that I’m not alone, that others understand and care. Every act of kindness, every message of encouragement, it all helps you keep going.
Reflection and Hope
CarrCARE: Looking back, how have you grown since your diagnosis?
Cienna: I’ve learned that my happiness doesn’t depend on my health. That’s the biggest lesson. No matter what my body feels like, I can still live a life I love.
CarrCARE: What message would you give to someone who’s just been diagnosed and feels scared or uncertain?
Cienna: You can’t control your symptoms, but you can control how you react. It’ll take time to adjust and learn how to live with it, but that’s okay. Remember, your health doesn’t define your happiness. You can still have a beautiful life.
CarrCARE: What does the word “survivor” mean to you?
Cienna: Survivor means strong. I’ve lost many friends along the way, and when I hear the word, I think of them and how hard they fought. It reminds me of their strength and the strength I’ve always had within me.
CarrCARE: What are you most hopeful for yourself and the community you represent in the future?
Cienna: I’m hopeful for a continued connection for people to come together to create change for those living with Periodic Paralysis, chronic conditions, and disabilities.. Every day I wake up grateful for that hope and the chance to be part of this movement.
Closing Moments
CarrCARE: Is there anything you’d like to add that we haven’t touched on today? How can people continue supporting your advocacy or following your journey?
Cienna: I’d love for people to follow me on Instagram at @ChronicallyPersevering and join us at PeriodicParalysis.org or @periodicparalysis. We’re building community, sharing stories, and creating change together. I’d also love to collaborate with CarrCARE to wear the shirts, support events, and help bring more visibility to rare conditions like mine.
CarrCARE: Thank you, Cienna, for sharing your story so openly and beautifully. It’s an honor to have your journey included in CarrCARE’s Survivor Stories series.
Cienna: Thank you. It means so much to be part of this. Together, we’re creating hope and representation for all of us.
