CF Community Interviews - MUST READ

Here is a fantastic list of individuals who are living out their life despite having CF or being a parent to a CFer or even a spouse to a CFer.  I truly never thought I would have this much participation in this blogger series.  We have parents to CFers in this list.  There are individuals who have gone through double lung transplants. Male CFers (fibros) getting married and having children.  Female CFers (cysters) who are pregnant waiting for their miracle baby. This CF community is just truly a place full of committed and dedicated individuals.  I am just glad I get to be a part of a wonderful community and group of people.

We need people who are impacted by CF to share their story and how they are overcoming this monster CF.   Here is how I started this series.  Click here to read the link.

Please read some of these wonderful interviews below.


CYSTERS

Anne -  age : 43   Double lung transplant warrior.  Really some great advice for CFers and parents to CFers in a 2 part interview. 
Part 1   Part 2  


Megan Lee Mobley - age 26  Double lung transplant warrior.  CF doesn't stand in the way for Megan as she defines the odds. Another interview with great advice for CFers and parents to CFers.  

Tara Haddix - age 33 Double lung transplant and kidney transplant warrior.  Tara received her double lung transplant at the age of 11!!! Yes, that is right 11 years old.  She is now 22 years with her second chance at life.  All I can say is Tara is a WARRIOR! 

Beth - age 25 recently pregnant and taking Kalydeco. Beth shares her story about trying to conceive and the battles she faced.  There is some great advice in there for all of us who are thinking about having children despite being a CFer.   

Rebecca Runyon Bryan - age 62 yes pretty awesome! Rebecca was diagnosed very late in life with CF at the age of 49.  Rebecca describes what it was like going through life not knowing what was wrong with her health.  She is now taking Kalydeco! In this interview you can also see a video of Rebecca and hear her wonderful advice. 

Julia Rae -  age 21 recently competed for Miss New York.  Julia is a wonderfully inspiring cyster to all of us.  She is a model, a singer, and a talented lady.  She has even created her own non profit to raise awareness and funds for CF.  Many parents to young cfers will LOVE this interview! 


FIBROS

Brad Johns - age 42  Brad is a father a husband and an awesome teacher.  Brad is a pioneer in his home state as he was the first fibro to go through IVF and have a success.  Even people who are not a part of this CF community would love to have accomplished all he has thus far in his life.  

Andy Lipman - age 40 Andy is a father a husband and an amazing Fibro.  He has raised over $2M for CF to stand for CURE FOUND. In this interview you will read some really wonderful advice on staying positive and battling CF.  



PARENTS

Jasara Hall - age 34 Jasara is a mother to a young fibro.  She gives a very colorful story of when her son was diagnosed.  She shares with us how it felt to hear the diagnosis, what she wishes she heard on that day from the doctors, and some advice for parents with a CFer.  

Jessica Pettus In this interview, Jessica describes what it was like finding out her son was in limbo CF status.  Crew is her son, and wasn’t diagnosed until a few months after his birth.  Crew passed the “golden rule” test in the CF community and that is the sweat test.  He was diagnosed with CF after a genetic blood test.  His mutations put him in a CF limbo status.  Both of Crew’s mutations were not the well known mutations that many of us CFers have.  So the doctors were saying Crew has CRMS.  CRMS is basically having a borderline sweat test with one or more CF gene mutations. Read the interview to find out more about CRMS and some great advice for all parents to CFers. 



SPOUSES 

Maria - age 29 Spouse to ME.  Maria displays what it's like being a CF Army wife as I call it.  She also sheds some light on our fertility battles and what it's like being married to me.  



If you would like to participate in this blogger interview series please email me.  jtodog23atsignyahoo.com    Yes, please use the @ sign.  I am trying to avoid the spamming.  Thanks.  We will be creating much needed CF awareness through these interviews.  





No comments:

Post a Comment