Life with a rare condition

By Nauwarah, Primary ciliary dyskinesia, Pakistan, June 7, 2019

life with primary ciliary dyskinesia

'I am not ready for this day' is the first thought when I wake up in morning. I was 7 months old when my parents went to UK for a short visit, I fell from table and suffered a minor head injury, luckily the doctors got all tests done and diagnosed with Dextrocardia Situs Inversus with Primary Ciliary Dyskinesia. In childhood, I could never understand why I had to frequently visit ENT specialists and Pulmonologists almost every month but I knew that there is something different about me as compared to other kids. In college, my condition got worse, I started feeling tired and cranky all the time and I didn't know why? I was not aware of my condition at all and never realized that I should study about it. I was good in studies so luckily I completed my graduation but those four years in university were really tough and tiring for me.

Now the increase in recurrent chest infections forced me to study about it and a friend who is a PhD doctor in Genetics helped me through it. After research and talking to few health professionals, I came to know what exactly I am going through and now I can discuss it with my doctors easily with complete understanding.

At this age when I am 30, life is getting hard as time is passing by, my body especially lungs feel more tired and less strength while coping up with infections which affects the blood circulation as well. Every morning, there is something new to deal with. I get breathless most of the time, nebulization and other inhalations give temporary relief to keep yourself going. For me struggle is getting through the day successfully till it ends.

Going through a rare condition is not just about physical, mentally you have to keep reminding yourself that you must keep trying for your own well-being. Illnesses are not always visible, physical health takes its toll on mental health as well. Self-counseling helps but I often need my pulmonologist who listens to me and motivates me which patients with rare conditions with no permanent cure badly need at times. I don't know what comes ahead but there is always hope for better health circumstances. 

'Remember, Red, hope is a good thing, maybe the best of things, and no good thing ever dies.'

~Shawshank Redemption 

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