Annual non-reimbursable treatment to successfully fight cystic fibrosis
Ends at: 05 December 2021
Imagine, that you can't take a breath, that you have an invisible bag on your head, which not allows you to breath. That's how i feel myself everyday, because each my breath is taken by Cystic fibrosis. I was diagnosed on this terrible disease when i was only 6 months old, that's why i can still imagine myself as a warrior fighting an invisible enemy. Disease is not only devastating the lungs, it causes the same to the whole body, it attacks Pancreas, Liver, Kidney and Intestine. I am only 24 years old and i just can't imagine that this disease can take my life at such young age. I have plans, many dreams, dreams of creating my own family.
I am now totally dependent from my parents and my sister. This is painfull that i can't wash myself or even make a sandwich. I don't want my life to look like this, where someone need 24/7 help beeing a young woman. I am crying inside when i see how many people are about to help me in simple life tasks and i want to change it.
Each day im taking lots of meds, which without i couldn't even breathe. Inside the Lungs Mucus is gathering itself and so makes it the Lungs perfect place for bacteries to reproduce, which badly affects general health and breathing.
In last months i have lost lots of weight. At the moment i am 37kg at 169cm height. That's way under critical BMI level which is dangerous for life. With this disease i have also unfortunately problems with hunger and i suffer regular Stomach Inflammations (Mide Enflamasyon) what makes it really hard to gain neccesary weight to stay healthy and strong enough to fight bacteries and infections.
Since childhood my second home was a Hospital. Lots of returning diseases are totally ruining taste of life and happiness. I fight each day with all strenght which is left in me. Unfortunately my lungs are each year weaker, and at the moment their efficiency is on 24% level. I make everyday many inhalations and other neccesary things to survive the day and i am always thanking the god that i was given to live one day more.
I am dreaming to get drugs against Fdel508 mutation, which are worldwide confirmed as highly effective against all the problems i've got. Situation is very complicated because this meds got no refund in my country. I am now even to weak to travel to other countries where they are refunded.
If you can - please help me... give me at least a chance.