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Grab your favorite drink and settle in with us weekly, as we discuss all the happenings in the PCD world. Our topics will include tips and tricks of living with PCD in your everyday lives, the latest on treatment options and how to fit them into your lifestyle, how to manage your stress and anxiety of having a chronic illness, how to become a better advocate for yourself or your loved one with PCD, and we will even touch on the controversial issues surrounding PCD and PCD Care.
“Primary ciliary dyskinesia (PCD) is a genetically heterogeneous, rare lung disease causing chronic oto- sino-pulmonary disease and irreversible lung damage that may progress to respiratory failure.” ~ Diagnosis, Monitoring, and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus Recommendations Based on State of the Art Review
“Primary ciliary dyskinesia (PCD) is a genetically heterogeneous, rare lung disease causing chronic oto- sino-pulmonary disease and irreversible lung damage that may progress to respiratory failure.” ~ Diagnosis, Monitoring, and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus Recommendations Based on State of the Art Review
27 Episodes
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Season 2, Episode 5; Nutritional Tips for PCDOn today’s episode about life with primary ciliary dyskinesia; we will talk about the importance of eating in PCD, food & drink safety especially when traveling with PCD, making foods that are more appealing & easier to eat when breathless, strategies to help you cope with the activity of actually eating, and finally on this week’s editorial we will discuss how hiding medications in your PCD loved one’s food has lasting repercussions for your loved one’s lifetime.
On today’s episode about life with primary ciliary dyskinesia; we will talk about the importance of airway clearance in PCD, the alarming trends to ditch airway clearance for PCD patients, mixing up airway clearance techniques to aid in better treatment compliance, we will explore another PCD myth, and finally on this week’s editorial we will discuss trend of dismissing adult patients experiencing with PCD based on the mere fact that these patients haven’t yet benefited from recent research.
On today’s episode about life with primary ciliary dyskinesia; we will talk about the realities of time, exhausted providers, appearance of infection control policies verses the realities, we will explore another PCD myth, and finally on this week’s editorial we will discuss off label usages and the correctness of those practices.
On today’s episode about life with primary ciliary dyskinesia; we will talk about navigating new or worsening symptoms, riding them out at home or heading to the emergency room, we will explore another PCD myth, and finally on this week’s editorial we will discuss PCD exacerbations in a Covid world.
On today’s episode about life with primary ciliary dyskinesia; we will talk about ringing in the New Year, pacing yourself, winter survival tips, we will explore another PCD myth, and finally on this week’s editorial we will discuss new year, new chances, and new changes to life with PCD
On today’s episode about life with primary ciliary dyskinesia; we will talk about surviving the Christmas holiday, holiday gathering considerations, strategic planning, we will explore another PCD myth, and finally on this week’s editorial we will discuss managing family holiday gatherings.
On today’s episode join our host Reneé as she talks about life with primary ciliary dyskinesia; she will talk about sexual health, intimacy with PCD, intimacy without sex, she will explore another PCD myth, and finally on this week’s editorial she will discuss inclusiveness.
On today’s episode join our host Reneé as she talks about life with primary ciliary dyskinesia; she will talk about social media support groups, group etiquette , sharing experiences over giving directions, she will explore another PCD myth, and finally on this week’s editorial she will discuss protecting other members’ privacy.
On today’s episode join our host Reneé as she talks about life with primary ciliary dyskinesia; She will talk more in-depth about PCD care, tune-ups, home tune-ups, she will explore another PCD myth, and finally on this week’s editorial she will discuss how to survive with PCD against others expectations of your life.
On today’s episode, join our Host Reneéas she talks about life with primary ciliary dyskinesia; she will talk about the importance of managing nausea, homeopathic treatments, sleep, she will explore another PCD myth, and finally on this week’s editorial she will discuss ACT devices.
On today’s episode join our host Reneé as she talks about life with primary ciliary dyskinesia; she will talk about the importance of maintaining your strength, nutrition, energy preservation, she will explore another PCD myth, and finally on this week’s editorial she will discuss the episodic nature of PCD.
join our host Reneé on today’s episode about life with primary ciliary dyskinesia; she will talk about the importance of knowing your medications, seeking additional opinions, being your best advocate, she will explore another PCD myth, and finally on this week’s editorial she will discuss Dr. Google & Dr. Facebook.
On today’s episode join our host Reneé as she talks about life with primary ciliary dyskinesia; we will talk about sinuses, dogs, school exclusions, we will explore another PCD myth, and finally on this week’s editorial we will discuss comparing PCD journeys.
Join our Host Reneé, on this episode of Turtle Talk, as she wraps up PCD Awareness month, talk about the next steps in awareness, she will cover some personal experiences in advocacy, explore another PCD myth, and on this week’s editorial we will discuss the notion that "PCD isn’t a big deal"
Join our Host Reneé, on this episode of Turtle Talk, as she discusses independence, caregivers, PCD life post pandemic, we will explore another PCD myth, and finally on this week’s editorial we will discuss PCD awareness month.
Join our Host Reneé, on this episode of Turtle Talk, as she discusses fatigue, tissues, nausea, another PCD myth, and finally on this week’s editorial she will discuss frog soup; as they relate to the primary ciliary dyskinesia patient.
Join our Host Reneé, on this episode of Turtle Talk, as she discusses PCD is it a disorder or a disease, airway medication does the order matter, do PCD children do know when they are in trouble medically, she will explore another PCD myth, and finally on this week’s editorial she will discuss PCD is a part of who I am; as they relate to the primary ciliary dyskinesia patient.
Join our Host Reneé, on this episode of Turtle Talk, as she discusses PCD awareness month, pitfalls of PCD awareness month, lung exerciser or airway clearance device, she will explore a PCD myth, and finally on this week’s editorial she will discuss ableism; all as they relate to the primary ciliary dyskinesia patient.
Join our Host Reneé, on this episode of Turtle Talk, as she discusses PCD Smiles, how to rock that hospitalization, truancy issues, she will explore a PCD myth, and finally on this week’s editorial she will discuss unsolicited advice; as they relate to the primary ciliary dyskinesia patient.
Join our Host Reneé, on this episode of Turtle Talk, as she discusses the question of the PCD Artist Project, pulmonary rehabilitation, transplants in PCD, she will explore a PCD myth, and finally on this week’s editorial she will discuss treatment burden; as they relate to the primary ciliary dyskinesia patient.
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