Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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nv_cf_fighter 05/10/2018

Hi so my name is noel and I just joined. I don’t really know why all of a sudden i decided to.... but it’s gotten rough recently. I’m only 16 and I have a younger brother with CF too but he isn’t as healthy as I am. Or he wasn’t. Over the past couple years I’ve been declining steadily. Mentally and physically. I don’t want to do treatments because what’s the point anymore? I don’t take my meds so I can be more like my friends and stop getting stared at by my friends. Up until now I’ve been very open about CF, but since I’ve started dating I’ve realized no one wants to date me because I’m sick. I just want to be normal.... but my mom is scared I’m gonna get seriously sick if I don’t start doing my treatments better, I don’t know how to make myself do them with out hating myself for Doing them. I dont know what to do anymore.

Gpdepr 06/10/2018

Hi Noel, IAM sorry to hear of your situation. I am a lot older than you (58), so I hope that my old age can be of benefit to you as far as advice. You sound rather depressed and I understand that too because I am a lot of the time. I was just diagnosed a little over a month ago and I hate doing that nebulizer. Can I ask what other meds you are supposed to be taking? Please keep on the meds. Advancements in CF care have advanced so much and they should be of great benefit to you. I had a brother who died of CF, but that was back in the 60's and they didn't even think I had it. Anyway, what I want to tell you is that you are very young and believe me, if you can wait it out, the right guy will come your way. You have a long life ahead of you and it sounds like you don't have a real bad case of CF. It will take some time, but I promise you things will improve if you put your trust in God. I don't know where you're at spiritually, but I can you that if I didn't have the Lord Jesus Christ in my life, I would be a huge mess. I'd be lying if I said I'm content always, but God keeps me going. I want to be off encouragement to you so I hope you decide to write back

saruuhhhhh 07/20/2018

I’m feeling the same way right now. My mom keeps saying things to me like “I hate seeing you kill your self” and stuff like that but it’s not doing anything to my head. I know something needs to change but I don’t know how ....I don’t have motivation or the energy to do this all the time

Sa5m 07/22/2018

Hey Noel I would love u to message me I’m kind of having the same problem as you with my cystic fibrosis

Bec_ 07/28/2018

I’m going through the same thing...

matthew2909 09/04/2018

Hey how are you doing you ok and I know how you feel I’m going through the same thing too

Cf_Fighter 11/04/2018

Hi Noel, I understand what your going through, I'm a point in my life where I don't want to do treatments and take meds because whats the point? I am a twin and she also has Cf so I understand what its like to have a sibling with cf. I was in public school up until this year and now i'm doing online school because of frequent admissions. My mom told my doctor that I didn't want to do my treatments and she just thought it was because I hate cleaning my nebulizers. If you ever need someone to talk to you can talk to me, even though were strangers I understand what your going through.

Salty-Cyster 11/04/2018

Hi noel, im Annabelle. I get what your going through. I think a lot, whats the point? I still get admitted every few months its not like medications help. Im 14, so close to your age so its a lot to deal with, especially with school. This year I started being home schooled because of admissions. If you ever want to talk im here.

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