Bog og film om Cystisk Fibrose: Five Feet apart

Den amerikanske spillefilm ”Five Feet apart” har netop haft premiere i USA. Filmen handler om at leve med den sjældne sygdom Cystisk Fibrose og er et kærlighedsdrama med et sjældent twist.

#Sjældne Diagnoser #Cystisk Fibrose

4 kommentarer

😟This is also a damn illness that you do not want. What is the current status of life expectancy?

Hey Erik, Great you leave comment on this topic, this rare disease close to my heart so deeply. 🙂 This question can answer the best Sofi. She is affected by it, I tagged her inside. Please be patient until she answers. 🙂

Thank you for sharing Liz 🙏♥️ Thinking of me

My answer to your question. The life expectancy of us CF patients has improved. However, it depends on the extent to which the disease has affected your organs except lungs, it may also be affected the pancreas. Life expectancy for ongoing therapy up to 50 years.

I have the hardest form. So far, the therapeutic successes have been minimal with me.
I can not do a lung transplant right now. I am too weak. Hope makes me the use of a gene therapy with healthy CFTR genes is still in the testing phase. However, this process promises hope for the future, even though is not yet possible to estimate, when it can really be used to treat patients. Until then I try to hold on and physically gain strength.

My life expectancy is currently 30 years, I am 22 age. 🙂


Keep my fingers crossed for you dearest Sofi, wishing all the best and hope that there will soon be a effective treatment for you ❤️🍀 Love and kisses.