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Where are we all from?
- Thread starter anonymous
- Start date
Hey Hey everybody, this is very exciting for me, didn't realize their were so many Canadians around on the site. Glad to see you all. Hey everyone else, don't mind you at all just different kind of medical stuff and such, and wanted both views on medical and all opinions and thoughts and comments are all very educating. So thanks!! On that note, how is everybody? I am glad someone replied to my mutation thing. I find that at four years old, I don't know the medical terms and such for most of my daughter 's medicals, however, I keep a diary on her health and treatments, but right now her health is excellent and she has never been sick or hospitalized. She has, since birth been pancreatic difficient, therefore takes her enzymes and the occasional puffers. This is so cool, all of you, I've just never had anyone to talk to who would understand or even relate. Hope everyone is swell, take care and talk to you real soon.Nicky
I live in southern Illinois. I am 30 with CF and CFRD among other complications. I also have 2 copies of the delta F508. I also have a brother with CF who is 23 and the same mutations. Our fev1 our very similar....mine is at 71%, while his is at 75%....but this is because he hasnt taken care of himself. For almost 20 years of his life you would not have been able to tell he had CF by his lungs....he had well over 100%. Mine have never been that good. Anway, just little bout me...Dea
Hi Rebekah Here!We are from Auckland, New Zealand my son Matthew has Deltaf508/r560t.I am yet to meet or talk to anyone who has the r560t mutation.Matthew is Pancreatic insufficent, he has had Pseudomonas however we have not had any infections at this stage.Matthew is 11 months old.Rebekah Lambert
Hey I'm Emily and I'm new to the site. I am 22 years old, live in Detroit, MI and oh yeah I have CF too. I just got genotyped but can't remember which two I have. I know they are not the F508. On Feb 21 I had a big benefit rock concert for CF called "Just Let Me Breathe" with my bro's band South Normal. They have a song called Breathe and the chorus is what I chose to title the event. Over 500 people showed up bringing in $8,000. If any of you are into fundraising let me know! Emilyletsrockcf@hotmail.com
Hi there peopleI am Rose Marie aged 38 I live just outside Edinburgh in Scotland UK, I have Cystic Fibrosis and I also have a non cf 17 year old son (well he is 17 on 19th April)I have one delta F508 gene and A455E gene I am in quite good health for someone with Cystic Fibrosis, I am lucky enough not to need enzymes as I am pancreatic sufficient, I have a portacath fitted for Intravenous antibiotics which i have every couple of months.Feel free to get in touch with me through this board. I will reply as soon as i can.Good health to all and lots of love and hugs and stuff to anyone who needs it <img src="i/expressions/face-icon-small-smile.gif" border="0">Rose Marie
MommyOfOzzy
New member
Well this seems to be the perfect post to stumble upon on my first day at this site lol. We are in Washington in the process of moving back to Oregon. My son Ozzy is 18 months. I have not found out yet what mutation he has. We've had our rough roads already but always staying possitive <img src="i/expressions/face-icon-small-smile.gif" border="0"> I am so happy to find this forum....good luck to everyone!
Hi! I'm from Avon, Indiana (suburb of Indianapolis) and mother to Ethan (8 months) with CF and Kenzie (3 1/2) without CF. He has two Delta F508s. He's quite big for having an insufficient pancreas and doing well (but had RSV around Christmas)! He goes to Riley Children's Hospital. Good to hear from all of you!
My name is Paula Regan. I am from Whitman, Massachusetts which is about 30 minutes south of Boston. I am expecting my second child in August that has been diagnosed with CF. I have a three and a half year old son without CF. I have enjoyed reading all your posts in learing more about this and what we are in for. Thanks again....
Hi AllMy first time on the site. I am Cassie, mother of Matthew 2yrs w/cf and Joshua 7months wo/cf. We are from Australia. It would be interesting to hear how you are advised to care for your children with cf in regards to the environmental factors - ie smokers, sick people, child care etc. Also treatments I read earlier - liquid enzimes - I have never heard of.Matthew has been really great - 1 hospital stay 16 days (no infection etc found) his main issues are his digestion. He has double DF508. Josh is a carrier.It seems common by reading the posts that people have two different genes - we have been led to believe it is fairly rare.Good health to you all.Cassie G. from oz<img src="i/expressions/face-icon-small-smile.gif" border="0">