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Posted By : Gemsi - 11/28/2014 6:32 PM
Cystic fibrosis effects many of us in many different types ways. Firstly people who use this site may have cf, maybe be the parent, cousin, friend, partner of someone with cf or may just like to know more about it.

Cf isn't a straight forward simple disease, it is multi-organ and multi-staged. It effects the lungs, digestive system, liver, fertility, heart. It effects every single person differently be we aren't text book cases and if we are then it's because the text book has actually been a biography about us as a person. There are many different mutations and even two people who share the same mutations can have a very very different cf experience.

So my question now is what brought you here, how are you effected by CF. Those with CF when were you diagnosed and how were you diagnosed. How do you find having CF in your life.

A general hello, nice to meet you how did you wind up here. :)

Gem
Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm from the UK so tell me if I say something you don't understand. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy.

Posted By : mbills2223 - 4/6/2015 11:24 PM
I'm here because I'm a carrier (G542X) as is my spouse (df508), and we are incidentally pregnant with our first son. He had an echogenic bowel show up on an ultrasound which is why we were tested. We are currently awaiting results of the amniocentesis but we are pretty certain he has CF. Regardless of the results, however, I now feel that I am part of this world, and so I'm here to learn and help as much as possible. I believe firmly that a cure, or what is essentially a cure, is coming, so I hope to assist in ushering that in however possible. In the meantime, I just wanna learn and help.

Posted By : Gemsi - 4/7/2015 9:44 AM
Hi there and welcome mbills,

Congratulations first off, having your first baby, you must be so excited despite circumstances.

I hope you find some good information here. People born today with CF have the best possible chance to live into their 40's. So many advances in treatment mean this number is getting better and better. When I was born life expectancy was just 5 years and I'm still here and kicking aged 29. It is very possible a cure is around the corner and if not further advances in treatments will be that good they treat all symptoms and make life more normal.

That's so good they were able to see that your baby may have cf and gives you plenty of time to get used to the idea and be prepared for it. I hope the rest of your pregnancy goes smoothly.

If you have any questions then ask away. I keep trying to check the forums when I can so will be here to help.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : mbills2223 - 4/8/2015 1:30 PM
amniocentesis results are in, our baby does in fact have CF

Posted By : Gemsi - 4/8/2015 5:12 PM
Sorry to hear that mbills. How are you feeling about it, are you OK?
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : mbills2223 - 4/8/2015 5:23 PM
I'm struggling...broke down a couple times today, but at the same time we kind of knew it was coming. i go back and forth from hopeful to defeated...I think it will be much easier to deal with once he's actually here. I guess now it's just time to focus on making sure I do everything I can for him and do everything I can to further the cause for CF.

Posted By : Gemsi - 4/9/2015 10:36 AM
I can imagine it is a very stressful time for you both.

For now I would just try to enjoy your pregnancy, you're growing a person a wonderful little boy and that's amazing. CF will just be a small part of him. It effects people in different ways so he might get bowel issues early on but then be fine for many years after or he may have more lung problems or he may have no symptoms really for many years, still need treatment but be perfectly happy and healthy.

It's a big thing to find out and uncertain futures always makes people anxious. It will probably easier for you when he is born and you're dealing with it all a bit more face on.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Posted By : mbills2223 - 4/9/2015 11:01 AM
I appreciate hearing from you Gemsi, and it's very helpful/motivational to speak with someone such as yourself who has dealt with CF. If you don't mind me asking, what has your experience with CF been like?

Posted By : Gemsi - 4/9/2015 11:49 AM
My experience with cf is, both my brother who is 2 years younger than me and myself have it. I was diagnosed at 2 years old about a month before my brother was born so he was tested right away. My mum went through a nightmare with me for my first 2 years as the doctors just thought she was an anxious mother and making up my symptoms and how bad I was. I was a very sickly baby.

Growing up childhood was pretty normal. We both had plenty of meds and nebulisers but my lungs were fine, I could run and play mostly. I had issues with my legs they thought was juvenile arthritis though later they decided it wasn't. Asthma was a big thing for me and I used to use any excuse to get out of PE. However I also used to play the trumpet and attribute that to my lungs now which despite having a colonised chest infection are pretty resilient and even when I take a dip and need iv antibiotics they bounce right back to high lung function after.

In adulthood I started working but couldnt quite manage it, so went onto disability benefits after 2 years. Though it is my proximal myositis that stops me not my CF. I went to college, got a hnc in computing. My brother however never has a chest infection, only has bowel issues. He works full time as a chef in a care home and nothing brings him down. It effects us both so differently it's crazy we both have the same mutations of cf, df508.

For me cf sits in the background, it annoys me when I can't do things. Like yesterday I bleached, sanded and painted the bathroom and today my body hates me and I'm hurting. But again that's more to do with my muscle issues., if it weren't for them I'd maybe just be a bit achey and tired so sometimes it is hard for me to separate what is causing what pain.

I still go out and have fun with my friends. I still go bowling and go to theme parks and play in mud (gardening ;)) I do what ever I can manage and more really. While it might make me achey the next day it's worth it. I have 2 cats, been married and divorced and now have a new partner who I've lived with for 3 years. My brother is married and looking into adopting children. He has a common cf problem in that his vans deferens is blocked. He could have ivf but they've been accepted for adoption also.

Not sure what else to put. Just wanted to let you know cf isn't everything that my life is about, it's just some of it. It's there, it can be annoying sometimes but it doesn't really stop me and definitely doesn't stop my brother.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Post Edited (Gemsi) : 4/9/2015 11:53:45 AM (GMT-6)


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