Thursday, March 13, 2014

Who Wants To Raise Cystic Fibrosis Awareness? It's Time For Your Interview

Over the past few months, I have debated about several things that I want to start doing in the CF community.  Through all my interactions with the cysters (female cfer), fibros (male cfer), and parents who make up the CF community there was something that stood out to me.  Everyone has a story tell!!! I guess what I am trying to convey is not a single one of us has the same story but we are overcoming obstacles every day in our life.  Some of these obstacles are directly related to having CF while others are just obstacles on our path to pursing our dreams.   What I want to do is showcase many of the stories that these individuals have as I find them inspirational, insightful, fulfilling, and most of all HOPEFUL.  If it wasn’t for having hope we would all be stuck on the statistics of this disease.  In fact, I still think there are way to many people who are stuck on the statistics of CF.  If we as a community thought just about the statistics we would be missing the gift of today and pursuing our future dreams.  Even with having CF we all can continue to believe in the possibility of accomplishing our dreams!

Recently, I saw a picture posted on Facebook. It said something like this……… “Without awareness, there is no funding. Without funding, there is no research. Without research, there is no cure. Without a cure, there is no hope. We need to work together to make sure there is always hope.”   There is some very powerful phrases/sentences in the above quote.    The first phrase is where it begins!!!  “Without awareness, there is no funding.”  I can tell you that the people I interact with outside the CF community basically have no idea what cystic fibrosis is.  When I tell someone I have cystic fibrosis I hear these common questions. “I have never heard of cystic fibrosis? Is cystic fibrosis the disease that effects your muscles? Are you contagious? I am sorry to hear you have cystic fibrosis.” 

To me that last point of having someone say they are sorry I have cystic fibrosis just rubs me the wrong way.  It would be similar to someone saying to me I am sorry you have hazel eyes, or have black hair (well technically it’s kind of more silver than it has ever been).  This is how I view my cystic fibrosis as if it was a part of me and something just like having hazel eyes, black hair, etc.  If it wasn’t for this disease I can tell you I would be a completely different person.  Instead of running away from the fact that I have a genetic disease I have decided to embrace it. 

I find it challenging to raise awareness if you do not embrace yourself or cystic fibrosis.  We are now in the season where everyone goes on Facebook and starts promoting and selling the Great Strides walk for the cystic fibrosis foundation.  I am really excited to see people out there asking for donations from their friends, families, coworkers, or even complete strangers.  But if you are not sharing how cystic fibrosis has impacted your life then why would someone want to donate to your cause? It’s almost as if we should be selling our accomplishments, struggles, and hurdles we have overcome to be here today.  If we are not sharing our stories with others we are not raising awareness as to why someone should donate to our cause.  We can show people how meaningful our life is even though we suffer from a chronic disease. 

Not only will sharing your story with others outside of our CF community help raise awareness, sharing your story inside the CF community does a lot of good as well.  Many of us with CF know very few individuals who suffer from this disease, at least in person we have not met.  This is why I am reaching out to all of you cysters, fibros, and parents to CFers to share your inspiring story.  You never know how many people will truly benefit from the struggles you have been through and the accomplishments you have achieved.  I like to refer to this community as a bunch of warriors.  We are all fighting the same battle of conquering CF.    

I am going to be featuring what I call interviews with the CF community.  I want as many people to participate as I can get.  This way we can create more awareness and share our stories.  To accomplish this I will be emailing questions to anyone who wants to volunteer to share their story.  You will then send your response back and be featured in your own blog post on my blog.  I will tell you that I have already put this idea to a few of you in the community and so far the response to this interview idea is pretty well received.  In fact I have drafted up some questions to some people who I already know of and their story.  I have been told that these questions are very good and will hopefully help many people out there. 

Here are a few questions from a few interviews I sent out already.  CFers, parents, and significant others will be featured.

CFers

Sample questions.

Please share your cystic fibrosis diagnosis (Include age, how you felt at the time of diagnosis, how was life before and after diagnosis)?

Once you realized you had cystic fibrosis did you change anything (did your goals change, views on life change, did you avoid certain things)?

What has been the biggest challenge for you dealing with cystic fibrosis?

Please share with us any triumphs you have accomplished because of cystic fibrosis?

Since you have shared with me that you were able to have children what struggles did you face on this path?

Were there things you wished your parents did differently as you grew up with cystic fibrosis?

I talk with a lot of newly diagnosed parents to CFers. Many of these parents feel the world is crashing down on them when they hear the two letters CF.  I want to know what you would tell a newly diagnosed parent to a CFer?

Since we know you are expecting your miracle child please share with us your feelings on being pregnant and having cystic fibrosis?

Now that we know you have had a lung transplant, how did you view the world before transplant and after transplant?

You have seen a lot of things as I call you a CF veteran.  I know we have talked about the early days of CF and where we are at now.  Can you describe what it was like in the early days of CF and where we are now and where you think CF is going?


PARENTS TO CFERS

Sample questions.

As a parent how has your child’s diagnosis changed your life?

What was it like hearing your child has CF?

What has your child accomplished despite CF?

Did you know about CF before the diagnosis? If not where did you go to find the information and how did it make you feel?

How do you raise awareness for you child when it comes to CF?

What have you learned about yourself from witnessing your child battle CF?

What worries you the most about your child having CF?



SIGNIFICANT OTHER 

Sample questions


What do you remember from the day you found out your spouse had cystic fibrosis?


How did you view life after you found out your spouse or significant other had cystic fibrosis?


In your words what does it mean to be a spouse or significant other to a CFer?




Who is with me on raising more awareness for this disease?  I want you to share your story and be heard!!! This is going to be a great way for us to bring more awareness and helping many other people in the CF community.  I cannot wait to start featuring everyone!!!  

Please contact me on here leave me a comment. Or send an email to me.  My email address is below after the jtodog23 there is the @ sign.


jtodog23(use the @ sign)yahoo.com






6 comments:

  1. Great idea! I'd do it.......I knew we knew nothing, & learn something new everyday

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    1. If you are interested, send me an email and tell me a little about your connection to the CF community. Email address is above. Thanks!

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  2. I think it's always a great idea share our stories! And having so many here in one place will be a great resource. The online CF community has been an incredible source of information, support, comfort and advice for me. I'd be happy to share some of my story if you need participants. :)

    livingstonlife@hotmail.com

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    1. Hi Jenny!!! I would love to have you share your story. I will send you an email.

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  3. Replies
    1. Hi Colleen!! I would love to share your story as well. I will send you a message on FB for your email address :)

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