Hi I am Ena from Croatia, one in a 320000 born with Kartagener syndrome which means that part of my lungs is not working (cilia) and my organs are set on opposite sides. Heart is on right side, liver on left side.. like all other organs in abdomen. For more info about disease it is easy to check on internet but let me explain how it affects my life:
I have very low lung capacity, less then 40%, even though I do lung exercises to increase it it is always around that scale. It makes me hard to go upstairs, walk faster, do cleaning work in home, even talk a lot.. I start to breathe heavily and cough.
THE MAIN PROBLEM I have constantly, whole life, every day and every minute is mucus which my lungs produce in enormous quantities (since cilia doesn't work, nothing stops microbs, bacterias, viruses, fungus and dust to accumulate in bronchi). To make you more easier to understand, it is more than whole jar full of mucus that I cough up in an day. It means I cough a lot.. all the time.
Due to good environment for bacteria in my lungs I have huge problem for several years now.. and it is called Pseudomonas Aeruginosa, bacteria which is almost impossible to kill with any medicine.
Several time a year I have "attacks of Pseudomonas", when I cough blood, cannot breathe and spend some time in hospital on intravenous medicines (antibiotics) and inhalations.
My day consist of inhalations, lung exercises and coughing.. and sometimes in between I work, do my hobby and spend time with friends. I would like to switch that :) To spend more time with people, work and nature, and less with hospitals, medicines and coughing.
And I believe it is possible, with your help! :)
This summer I spent 10 days in one island very far from coast, surrounded only by sea, with lot of pines, oregano plants and olive trees. And I could breathe better! For 10 days I realised how life can be at least little bit better! That I can breath in little bit more air, clean air. There is no pollution, there is no bacterias and viruses. Plus swimming in clean sea helped me clean my sinuses like never before, and like any inhalation method. Name of magical island is Lastovo.
My wish is to build one small house with 2 living units on that island where I can live, actually live! and in another unit I would host for some time anyone with problems like mine.. Problems with breathing. It would be like small sanatorium, where people can come, exercise breathing in clean air, swim to clean sinuses and strengthen lungs, and we could connect talk and exchange experiences, advise each other.
Thank you for reading my story, understanding my fight and funding this idea which would help me live, and help others to breath too.