Kartagener’s Syndrome.
This is a place for all the medical jargon about this rare disease, exploration of various symptoms, studies, research, current & emerging drugs, and dispelling online inaccuracies.
For a Patient’s POV…
a.k.a. no heavy medical stuff, follow my online journal, where I share my experiences as an artist and living with this disease since birth.
Check back because I will be filling this page with all kinds of information about KS/PCD as well as old and new research and even some promising new drugs that are currently in clinical trials! (it pays to ask your doctor who works at one of the best research university hospitals in the country a lot of questions!
Kartagener’s Syndrome is a rare and frustating disease with paralyzed cilia, bronchiectasis, reversed organs and interstitial lung disease.
Kartagener's Syndrome, also known as Primary Ciliary Dyskinesia (PCD), is a rare genetic disorder that affects the cilia in the body. Cilia are tiny, hair-like structures that line the respiratory tract, sinuses, ears, and other parts of the body. In individuals with Kartagener's Syndrome, these cilia are either immotile or have impaired movement.
This condition can lead to a range of symptoms, including chronic respiratory infections, sinus problems, hearing loss, and fertility issues. Additionally, Kartagener's Syndrome is often associated with a condition called situs inversus, where the internal organs are mirrored from their usual positions. For example, the heart may be on the right side of the chest instead of the left.
Management of Kartagener's Syndrome typically involves treatments to alleviate symptoms and prevent complications. This may include antibiotics to treat infections, airway clearance techniques, and interventions to improve fertility in affected individuals. While there is currently no cure for Kartagener's Syndrome, ongoing research aims to better understand the condition and develop more effective treatments.
***That last statement? This is why I’m doing this site and blog. To raise awareness and why rare diseases do not get the attention it deserves in terms of research and especially treatments and drugs to ward off pseudomonas which becomes resistant to eventually all antibiotics.
Why here? Why now?
There’s never been a concrete place to get good balanced information about what life will be like with this disease. I say balanced because there is a great PCD forum online but it’s filled with people in crisis or desperate for answers. They provide a great service but there’s little about people thriving despite the daily symptoms and treatments involved. Even today, after a bit of research that I usually do online every now and then, there’s so much misinformation. My parents were told I would grow out of it. And recently in a 2020 post I read online on a health website written by a nurse, similar sentiments were stated — that most no longer get infections after age 20. Nothing could be further from the truth.
Contact us.
Have something to share for the medical page or see anything that may contradict? I’m welcome to all comments. This is a rare disease and doctors are still learning about how to treat us. Learning info from others is a huge asset.
From the author of this page…
My blog (online journal) is MY story of living with a rare disease I was born with called Kartagener’s Syndrome and PCD. I am not a medical professional. Every post (unless noted) is from me, a patient’s perspective, and my life experiences. I am writing this, well, because it’s time. After 50 years of waiting for someone else to document their life experiences, what they did, and maybe to learn why others survived and others sadly didn’t I got fed up. And decided to do it myself. So here I will be talking about my past, present, and future, living with this odd disease and not only help someone else with KS/PCD but anyone living with a chronic illness.