Friday, May 31, 2013

On Playing the Tiles

It's the end of May, and also the end of National Cystic Fibrosis Awareness Month here in the states, but don't worry: we still have lots of Community Faces guest blogs to post. Because, after all, CF doesn't stop just because May is over -- and neither will we.

I was thinking the other day about what "awareness" means to me in and what it might mean to the other 69,999 people all around the world who struggle against this insidious little monster. Most people I meet on the streets today have some general idea of what I mean when I say I have CF, even if I do still get a lot of responses like "that's like asthma, right?" or even the occasional "oh, yeah, I think my my dad had that once." The visibility of our disease is increasing, especially with the buzz around new drugs like Kalydeco and the use of social media to help educate and inform more people about what CF is or why research is important. I have to admit, it's nice to see an option to donate to CF at the register of my local CVS or Party City, or to go into an ER these days and not have to be asked "when did you first catch cystic fibrosis?" by 75% of the staff. The proof's in the pudding, and we ARE making an impact. Awareness, it seems, is a beautiful thing.

Recently I read a book documenting the often hilarious underworld of competitive Scrabble. You know, the board game based on drawing tiles and forming words? Confession time: I'm kinda obsessed. In the book (which is called Word Freak and is a super fun read if you like journalistic nonfiction) the author notes that it's considered bad form at Scrabble tournaments to complain too much about the tiles you draw. Everyone has the same chances at drawing either a good or a bad rack, the author explains. The thing that separates great players from merely good ones is not what they draw, but how they play the letters once they have them.

I'm sure you see where I'm going with this.

Most people would probably assume that having CF means you drew a pretty shitty set of genetic tiles. In some ways, of course, they'd be right. I'm pretty sure that no one in their right mind would ever want to be born with a currently incurable disease that attacks two of the most basic and vital acts of survival: your ability to breathe and to digest food. I'm also fairly certain no one would willingly sign up for a disease that still kills children, that causes your body to literally drown itself in its own toxic goo, and that -- just when you think it's safe to let your guard down for just a single minute -- is constantly coming up with new and often super creative "secondary" issues to throw into its deadly mix. To be honest, when new parents reach into that letter bag, I doubt that any of them are hoping to pull out a "C" and an "F" for their children.

But sometimes it happens anyway, and then what? Then it's all about how you play the game.

CF awareness, to me, is about bringing other people in to play on our (winning) team. It's about reminding ourselves and the world that we are not beaten, not even broken down, and maybe just angry enough to push ourselves to play even harder. Seeing all the faces of kids and adults with CF filling my Facebook newsfeed during this month was a constant slap in the face about why I keep searching for newer and better moves to outsmart my opponent. Because what I am most aware of, personally, is that this is not a game we can afford to lose. These people -- myself, my friends, the kids I see at Great Strides and the parents I've comforted in waiting rooms -- are not "CF statistics." They are not the faces of this disease. They are the faces of themselves. Each and every one of the 70,000 of us worldwide is the face of a perfect creation, of a person with so much to offer the world besides just some vague notion of "awareness," of someone who is way more than just a CF patient.

That is the side of awareness I want to focus on. Forget the statistics for one second -- focus your eyes on a single face. Forget the monster in the darkness -- turn your face to see the amazing people standing in the light. These are the folks who learned long ago that they had better things to do than complain about their tiles. These are the people who are playing for their lives.

Turn your head. And help us win.

Wednesday, May 29, 2013

Community Faces: Amanda

Some of you might have guessed that I'm a big big super fan of the CF community.

Despite a lot of volunteer and advocacy work with The Cystic Fibrosis Foundation when I was growing up (a privilege offered me by my amazingly insightful parents, and for which I am beyond grateful),  I was not overly involved in what I have come to know and love as the Cystic Underground. For one thing, after all, there's only about 30,000 of us in the United States, and while two of these other 29,999 happened to live right next door to me growing up, I wasn't really on any missions to widen my CF circle in the way some CF kids of my generation did. I never attended CF camp, for example, nor did I seek out support groups or playdates even back when those were encouraged -- in the land before infection control. My parents had some friends with CF kids, and I met some through Great Strides or clinic or the hospital, but for the most part even up through college my contact with other CFers was limited to those I happened to run into either in the medical world or, occasionally, just through regular, everyday activities like, say, my church group in college.

Fast forward 25 years or so, however, and I realized that my CF was becoming more and more a part of my identity, rather than just a part of my lungs. For me, personally, this wasn't a bad realization -- it was simply an acknowledgement that my disease was looming somewhat larger in my life as an adult, and therefore required more of my day-to-day attention. As I entered the high-powered workforce, for example, I learned to reach out for advice from other CF folks who had been there, done that, and were in the midst of successful and fulfilling careers. As I moved out by myself in New York City, I sought support from fellow travelers who also had no one to bang on their backs or call the doc for them anytime they got sick, and I realized that CF adults can live safely and happily on our own. And as I faced the reality of lung transplant and struggled with how to react to my changing health status, I looked to my new friends in the CF community for guidance, support, stories, and survival tips. I don't think I'm exaggerating one bit when I say that you all helped see me through every step of the way, and continue to do so today.

All of which is just a small part of why today's Community Faces guest blog, from the founder of one of my favorite CF community hang outs, is super special. Huge thanks to Amanda for taking the time to write her story of faith, friendship, and so much more in the face of our shared little monster. I'm thankful for your friendship, your advice through the years, and that small little place you created "out of boredom" that has grown to have such a special place in all our hearts.

Community Faces: Sounds from Underground

Name: Amanda Berrie 
Relationship to CF: CF Patient -- DF508, R1162x
Facts about Amanda:  

I like painting, drawing and taking pictures.
I love my dachshund babies.
I can take or leave long walks on the beach, but the beach is fun.
Let's go fishing!

I don't really know how to write my story, so here we go. I was born seemingly healthy, happy and normal.  However I just wasn't growing like I should. A few doctors even started to accuse my mother of not taking good care of me. One day my mom saw a talk show, at a time she normally didn't watch tv, and they were talking about cystic fibrosis. A light went off in her head: "that's it!".  Finally a doctor listened and at 16 months I was diagnosed with cystic fibrosis.  And so the adventure began.

My parents, mom especially, instilled in me that although I have cf I am no different. My mother encouraged me in anything I wanted to do.  Whether it was playing with animals or being artsy, she always said "you can do it!", or "how can I help?".  She never let me use CF as an excuse, nor did she herself try to use it to stop me. I am forever grateful for that.

I'm a country girl, I grew up getting down and dirty and I still do to this day.  But I clean up real nice! :)   

I am married to my best friend. He is my leader, counselor, love, nurse, and protector.  God placed him in my life at the right time, and he saved me from the ugliness.  Although I had wonderful encouragement at home, at one point I let the ugliness of CF consume me.  That is the simplest way I know how to put it. Ugliness. Darkness. The Pit.  All consuming black hole.  I finally gave in and asked God to help me out of it, I couldn't do it alone or by myself. Yes I had my family, but something was just missing. This meant allowing God to help me and guide, the other part was having some one else along the way.  Enter my husband. Right time, right place.  Can you believe this guy even research cystic fibrosis on his own, and still wanted to date me!?!? With God, he pulled me out of that pit. While there is still ugliness, I now look for beauty and I see beauty everywhere. 

Through many hospital stays, PICC lines, ports, surgeries, home IVs, daily meds, treatments,  bad days, good days and all the quirks that come with cf;  I  learned quickly to enjoy the simple things in life.  The small things can be great and are what makes life so wonderful.  I was recently asked what is on my bucket list.  I couldn't answer. I enjoy everything as it comes.  My advice would be; don't be to busy trying to check things off a list and miss something that is right in front of you.

If you can't tell, I do have a strong faith in God.  ;) Above everything else, God guides me and leads me along this path, my foundation.  God is with me through everything.  This life is greater than myself, and if along the way I get to share my faith with someone else, that to me, is worth it.  If happiness, encouragement, God's love and hope is shared...worth it.

Almost 11 years ago I felt the need to reach out to the cf community.   I needed to talk to other cfers and at the same time I wanted to create a place for people to gather and get support, and build friendships.  So became a group called cf2chat created out of sheer boredom not thinking anyone would find it and if they did it wouldn't be many. To my surprise, it grew and grew quickly.   There have been many members come and go through out the years. Many life-long friendships made in the group for many.  There has also been great heart ache as members pass away.  Some times the pain is so great I would rather throw in the towel and hide away from the CF community all together.  That can not be done.  This group means so much to every one there.  This group has been something greatly needed for some.  People, whether they have CF or are a loved one, need this group and others like it.  The bonds that are made in groups like this are unique.  You connect with people who share in an experience exactly the same as yours, or at least similar enough you commiserate. You know what each other is feeling without having to express it. It is almost indescribable the support a person can receive, even if it is just a simple "We are sending you hugs."   

Since being involved in the CF community I have learned we are a unique bunch of mutants.  Strong, confident, appreciative, beautiful,  and supportive. Even if one doesn't feel that way,  they really are.  I feel honored to be part of it all. That may sound cheesy, but I like cheesy sometimes, and cheese is good :)

To visit Amanda and more of the CF community online, please check out CF2Chat, a great support community for folks with CF and all those affected by this disease.

Wednesday, May 22, 2013

Community Faces: Jessi

People are always asking me whether I consider myself "sick."

The truth of the matter is that, most of the time anyway, I don't think of myself in terms of my illness. Through the years I've learned that it's far easier for me to go about my daily life if I'm not overly hung up on labels, diagnoses, medical records, or even the bronchoscopy report I saw yesterday that listed me as "class III: a patient with severe systemic disease." Thank you, grade assessment program.

When you get right down to it, though, I have a lot of medical codes after my name. Cystic fibrosis is my primary diagnosis, but it's followed by CF-related diabetes, lung transplant, complications of lung transplant and rejection, malnourishment (I can't even tell you how much I hate that one), immunosuppression, and a heart condition known as supra-ventircular tachycardia (SVT) -- among others. These are more than just numbers on a chart, of course, but when it comes to how I view myself they honestly don't make too much of a difference. Another day, another diagnosis, right?

That's part of why I love today's Community Faces post, written by a fellow CF lady who also happens to have a diagnosis of Epilepsy to add to her list of medical accomplishments. Special thanks to Jess for taking the time to write for the series and for sharing her story of life between the ailments. Happy reading, beautiful people.

Community Faces: Jessi Mollman

Name: Jessi
Age: 31

My name is Jess, I'm a 31 year old woman from Seattle, WA with CF and epilepsy.  My CF was diagnosed at about 6 weeks of age.  The epilepsy was diagnosed in 2010.

There is no known connection between CF and epilepsy, but epilepsy does make CF care more complicated.  There are some antibiotics, merropenum and immipenum are two, that increase the likelihood of seizures, especially in someone who has a history of them.  As a result of that risk those antibiotics have become a last resort for me.  Only if my bacteria become resistant to everything else will these meds be used for me. 

Sleep deprivation is a common trigger for seizures, and has triggered mine in the past.  This becomes a huge problem when I'm in the hospital or doing home IV antibiotics.  Its hard to sleep in the hospital because of the noise, the uncomfortable beds, nurses coming in to start meds in the middle of the night, among other things.  Even when I'm doing home IVs I have to adhear to a strict schedule and usually can't get a full 8 hours of sleep in a single stretch.  With my last round I was lucky to get 5 hours.  I know some people who adapt their medication schedule so they can get more sleep at night but I can't do this.  I have to keep the levels of meds in system as consistant as possible or I risk seizing.  I've actually had very small seizures when my antibiotic levels get too high.  I have to take every chance I get to nap or I risk having a seizure.

I was fortunate that the first anticonvulsant that my neurologist tried has been very effective for me and I don't have any side effects from it.  The only thing I don't like about it is that it interacts negatively with diflucan, an antifungal medication.  Antibiotics increase the chances of fungal infection because they kill the good bacteria in your body as well as the bad.  Diflucan is the easiest way to treat fungal infections because its just a pill.  However, since I can't take it I have to use creams or a mouth rinse when I get thrush in my mouth.  The creams and rinse don't work as fast as diflucan and the rinse tastes horrible.  Considering all that I have going on, is this really that big of a deal?  No, but anything that makes my life easier is a plus!

My epilepsy diagnosis was a total surprise, no one else in my family has it.  While it has made things a little more interesting for me I feel like I have adapted very well and continue to live my life.  Not much gets in the way of me having fun and taking care of business.

Friday, May 17, 2013

Community Faces: Katie

Every so often an email comes through my inbox that just makes sense. Every word resonates in some way, the experience makes me smile, the determination through the page makes me believe that cystic fibrosis is NOT and WILL NEVER BE stronger than us and our will to get out there and live. And I'll be honest: I need these notes, a lot. Because while I truly appreciate every message I get from the CF and tx communities -- I want to share our hard times, our struggles, the good with the bad, and the entire spectrum of emotions that come with this beautiful gift called life -- sometimes we all need to take a little "virtual honeymoon."

That's why I love this next Community Faces guest blog so darn much. It is strong. It is real. It is determined. It is her and it is US -- every single one. Thank you, Katie, for sharing your story, and for your choice to continue living loudly for a long time yet to come.

Community Faces: Sounds from the Underground

Name: Katie Fielding
Age: 31 with CF
CF Stats: Diagnosed at 1 year old, Double DF508
Find her at: or @katief on Twitter and Instagram

Click. Click.

Last summer I was taking pictures in Finland.  I'd been there a few days when I realized the pain was back. Back in my finger that laid on the cameras shutter.   Only a few months before had I felt this pain for the first time.  The doctors and I had still yet to figure out if it was an allergic reaction to a drug or CF related arthritis. At this point the verdict was clear, CF arthritis was going to be a new presence in my life.      

What do to in a foreign country? I had just started 5 weeks of travel for which I carefully planned how to handle all my meds; I wasn't about to go home over some joint pain.  I went to the internet and looked up the Finnish name for the drug that I could take that would help.  I went to the apotek and find that I am able to get it there over the counter.  I know that the pain will soon subside.  

My honeymoon won't be ruined and won't be cut short. Even though I have been on many honeymoons before--and I am not even married.  I take honeymoons all the time. I take those trips that people "wait" for.  The dream trips.  Im planning another one as I write.  

Its because of CF that I don't wait to take these trips.  I don't need a special occasion or even a travel partner. I want to see, do, and taste now.  I want to experience it all, before the day Ill have to pause to breathe. I know that if CF teaches us anything about life, it is that NOW is all we have.  Those of us who breathe for a living, also have to live for a living---it makes all the research dollars and scientists work all the worth while.  I fight CF by living loudly. 

When I get on a plane or ride in a train, a part of me thanks all the things that brought me to that moment.  My parents, family, and friends who have undying support for me, and the CF Foundation and my doctors who have provided me tools to be heathy enough to see the world. 

Ill keep on traveling for myself--and those with CF who cannot.  

Wednesday, May 15, 2013

Community Faces (Interlude): Me, Myself, and Bob

Alight, guys, I know everyone is excited for the next wonderful story from our amazing community, but because so many of you have asked (and because when I started this blog I vowed that it would be an honest chronicle/outlet for my journey through this crazy world we call CF and lung transplant), I decided to take a brief interlude to fill you in on another CF story that many of you may already be familiar with: mine.

As most of you probably know, May is National CF Awareness Month and also the month when most of Chapters hold their largest national CF Foundation fundraiser, the Great Strides Walk to Cure Cystic Fibrosis. This year, totally to my surprise, the CFF decided to use one of my quotes along the course. It was an unexpected honor that, quite frankly, makes me proud to be a very small part of the fight for a cure. It reads, "I was told not to go to college, then not to study abroad, then not to go to law school, then not to work at a firm. But here I am." The quote was taken not long after my double-lung transplant back in 2010, and it was meant to convey that people with cystic fibrosis can often accomplish the unexpected regardless of the limitations that CF tries to put on us. Note that I don't consider any of these accomplishments particularly extraordinary in and of themselves -- it's their very normalcy that makes them, in my mind, so spectacular. The fact that I, as a person with CF, have been able to go about the very average and ordinary business of living out my dreams and planning for a future is, to put it mildly, a blessing beyond my wildest dreams. And while it may have taken a little extra determination (and stubbornness!) on my part, it was really all of YOU who helped so much to make this ordinary/extraordinary life I love so much possible. Thank you, sincerely, for all you do to help cure cystic fibrosis and allow so many of us to live healthier, stronger, and more extraordinarily ordinary lives.

But, of course, some medical truths are not all sunshine and (65) roses. In my case, the other side of the coin is that I am back on IV steroids at a ridiculous dose (1,250mgs daily by IV) to help combat the rejection found in my latest bronch -- yet another factor in my seriously lackluster lung function as of late. I am also taking antibiotics through a variety of different delivery methods (Cayston, anyone?) and have to repeat the bronch in a couple of weeks. My ever-diligent doctors are running every test under the sun, from lung perfusion scans to cellcept trough levels (so rare no nurse coordinator at my tx center had ever run one) to, of course, PFTs and CT scans and all that jazz. 

The other truth of the matter is that I'm hopeful. I'm hopeful that we can resolve the clots, rejection, and infection and get my PFTs up, even if not quite as high as they were before. I'm hopeful that with carefully monitored exercise I can increase my activity tolerance and my O2 readings, as well as get my HR down to something resembling what I'd like to see. I'm hopeful that we can at the VERY least stabilize things more or less where they are and that I can work from there to make my life wonderful and fulfilling and long within the constant realities of cystic fibrosis and transplant. I'm hopeful that we can cure this little monster and that no one with CF today will have to go through transplant, miraculous as it is. I'm hopeful about a lot of things, frankly, because that's my choice. And even though hopeful doesn't mean I never get frustrated or scared (believe me, I do -- on both counts), it does make those very human emotions a little easier to deal with when they bare their ugly teeth. So I am hopeful, and I am grateful, and I am happy, and I am . . . really super hungry? Thanks for that one, steroids.

I recently did an interview segment with Everyday Health entitled "Outliving Cystic Fibrosis." I described it on Facebook as the story of CF, community, and "cysterhood." It features cameos and picture shots of some of my truly incredible CF friends out here in NY, and it does a beautiful job of highlighting the delicate balance of faith and fight that characterize life with "our little monster." Please take a second to watch the video, and thank you so much to Everyday Health and their wonderful team for joining the fight to spread CF Awareness.

So there you have it: the good, the bad, and a chance to put a voice with the blog! Hope you enjoy it, and please tune back in for more Sounds from the Underground coming up soon.

Love, light, and HEALTH, beautiful people. 

Wednesday, May 8, 2013

Community Faces: Lisa, Chris, and Max

When I speak on behalf of the CFF or at CF education days, I often lead with a story that has become a powerful part of my family's personal folklore: my diagnosis. At 6 weeks old, I was admitted to the hospital with a diagnosis of double pneumonia, spinal meningitis, and failure to thrive because I hadn't yet regained my birth weight. My parents were told that they would need to stick around for a few days while the doctors ran tests to figure out what was wrong with me, and as they settled in a young girl of about 6 pushed an IV pole up to the hospital room door. She introduced herself and asked what my parents what was wrong with their baby, and when they responded that they didn't know yet she added that she had "sixty-five roses." My father later asked the nurse what that meant and looked up the term "cystic fibrosis" in a medical dictionary. When he read the definition he turned to my mother and said simply: "well, Kathleen, at least we can be grateful she doesn't have that." I was diagnosed a few days later, and the doctor explained the prognosis as "just take her home and love her as long as you have her."

I'm so grateful they didn't listen.

Each CF family has a different diagnosis story, and each is super powerful in its own way. Diagnosis with CF -- whether it comes at 6 weeks or 60 years -- is a powerful, life-changing event. And because 70% of CF patients are diagnosed before the age of 3 (a number significantly increased by newborn screening, which is now mandatory in all 50 states), it is most often the parents who feel the brunt of that initial diagnosis moment. I like to think that doctors are no longer telling parents that the best they can do is take their child home and wait for the inevitable, but that doesn't make it easy, and it doesn't make the stories any less an indelible part of each CF family's personal journey.

Today I'm thrilled to feature a Community Faces guest blog by Lisa Sankey and Chris Brungardt about their son Max. As always, CF parents (and their awesome kids) never cease to amaze me. Thanks, Lisa, for sharing your story!

Community Faces: Sounds from the Underground

Names: Lisa, Chris, and Max
Connection to CF: CF Superparents and son, Max
Age: Max is 9 years old with CF
From: N. Dakota
GS Team: Team Max Fargo

We didn’t have a clue that we were carriers of the CF gene.  No family history, nada.  After a normal pregnancy, our son Max was born.  Later that day, he took his first airplane ride when he was life-flighted to Children’s Hospital in Minneapolis for a bowel obstruction due to meconium ileus.  Seems the local pediatric surgeon was on vacation.  We knew nothing about cystic fibrosis other than what we’d seen on an ER episode regarding lung transplants.  Suddenly we were learning about bronchial drainage (bds) or beatments as we called them, nebulizers, enzymes… 

Initially we were worried that he’d always be the sickly child.  In and out of hospitals. Missing school, not have any friends or a normal life…  We got into a routine with treatments, meds.  He started daycare.  We found a place which focused on exercise, outdoor activities year round.  He thrived!  We’ve enrolled him in different sporting programs ---- swimming, skating, tennis lessons, gymnastics, and baseball.  He still hasn’t found his niche, but stays fairly active.

Knock on wood… We’ve been quite fortunate with his health.  A few colds, sinus issues, exacerbations requiring oral antibiotics….  We attribute it to maintaining a consistent regimen – chest physiotherapy via the vest 3 times a day and medications made possible through efforts by the CFF.  And vigilance…  We do realize things can easily change for the worse. He’s had one hospitalization since his original NICU stay which occurred a few years ago and was due to a bowel obstruction cause by adhesions from his surgery as an infant. Today he’s an active, happy 3rd grader.  He’ll be 10 years old in June.  His mutation is Homozygous Delta F508. 

Our Great Strides name is Team Max Fargo.  We also participate in the Fargo Brewers Ball for Cystic Fibrosis, which will be on October 4th.

Monday, May 6, 2013

Community Faces: Christy Hamilton

As promised, today kicks off our official celebration of CF Awareness Month at A Matter of Life and Breath! So far we've received many wonderful stories/creative pieces from around the CF community, ranging from topics like parenting with cystic fibrosis to learning of a child's diagnosis for the first time to traveling in Europe and searching for meds. Just as a reminder, ALL stories and perspectives are welcome (we could especially use some more voices from the parent/spouse/friend/family member arena) and no format is off limits. All you need are the following elements:

1. Your name (first, first/last, or pseudonym acceptable), age, and a picture;
2) Your story, however you choose to tell it (limited to a few paragraphs, please!);
3) A few of your personal "CF statistics" (be creative: age of diagnosis, mutations, GS team name, etc).
4) Email the above to

Poetry, fiction, personal essays, creative works of any kind -- let's show ourselves (and the world) that CF stands for CREATIVE FORCE!

Today's first (and very special) guest blog is from a dear friend and fellow CF/transplantee. Christy is a force in the CF community -- there's really no other way to describe her. She is also, as you'll read for yourself, a wife, a mother, a sometime photographer and photoshop guru, a blogger, and a fashion forward super mama. Or, in other words, she's totally awesome. But don't take my word for it, see for yourself.

Community Faces: Sounds from the Underground

Name: Christy Hamilton
Age: 42
CF Statistics: Survivor of living-lobar lung transplant and living-donor kidney transplant; married; 17-year-old (and absolutely beautiful!) daughter.

I was born in 1970 to a wonderful, loving family. After a diagnosis of failure to thrive, I was tested for CF at 16 months of age. That test showed that I didn't have CF, but over the years, things got worse, and after seeing a specialist hours from home, I was finally given the diagnosis of CF at the age of four. I don't remember my childhood being different than anyone else's except for some chest pt daily and enzymes with meals to digest my food. I was a cheerleader in high school, an aerobics instructor, and a lifeguard in the summer months.
My first hospitalization for CF wasn't until the age of 23 after a bout of the flu that led to pneumonia. I was in nursing school at the time pursuing my dream of helping others. Marriage, graduation, a new nursing career, and giving birth to my beautiful, healthy baby girl all followed.
At the age of 28, I developed an infection called Mycobacterium Abscessus. I deteriorated from that so fast and needed a lung transplant at the age of 31. Both of my lungs were removed, and I received a lobe from my mom and another from my uncle. I needed a kidney transplant seven years later, and my mom was also my donor for that. She has given me life three times!
Today, married to my second husband Jason and having lived 11 1/2 with my new lobes and 4 1/2 years with my new kidney, I am loving life! I remember asking my doctor when my daughter was five if he thought I would live to see her graduate from high school. He said that he absolutely thought I would. She graduates in 13 months, and you better believe I plan on being right there with her! God has blessed me in so many ways! Raising money for the Lung Transplant Foundation, which helps fund research to extend the lives of those with lung transplants is where my focus is regarding charitable work. Getting a lung transplant recipient off the table isn't enough!!!

Wednesday, May 1, 2013

**BLOGGER CHALLENGE: Community Faces**

April showers bring May flowers -- 65 roses, to be exact!

May is National Cystic Fibrosis Awareness Month in the US, and a Matter of Life and Breath is getting in on the fun. Even better, we want YOU to get in on the fun too. And since you all have been so patiently (no pun intended) reading my ramblings for so many years, I thought it was only fair to give you a break. Or, rather, give you a blog.

I'm super excited to announce a new CF Awareness Month project entitled "Community Faces: Sounds from the Underground." Throughout this month, I will be featuring a series of short, personal guest blogs by members of the CF community. And by "members" I mean, well, all of you. I mean CFers of all shapes, ages, sizes, and gene mutations; I mean parents and siblings and spouses and grandparents and maybe even that nutty cousin you only let out on special occasions; I mean friends, volunteers, caretakers, and support systems; but most of all I mean dreamers, believers, and nutty folks like me who think that everyone has a story and who would like to a second to share theirs with some totally cool people/readers. I mean writers, which of course means all of us.

This project aims to spread awareness and to highlight some of the beautiful Community Faces of cystic fibrosis. We are 70,000 people worldwide coming from all types of experiences, backgrounds, beliefs, and cultures. That's 70,000+ amazing stories of strength, courage, humor, achievements, wonderings, wanderings, and LIFE. I can think of no better way to celebrate CF Awareness Month 2013 than to let some of you all strut your stuff.

So here's the nitty-gritty:
Posts should be no more than a few paragraphs in length (blog size) and must be in some way related to life with cystic fibrosis. The rest, however, is completely up to you. You can write about your health, your achievements, obstacles you've overcome, your family, he future of CF research and what it means to you personally, or just your own perspective of life with chronic illness. You can write a funny post, an inspiring post, a memorial post, a hard post, or any other sort of post. The only rule is that the tone MUST be respectful of others, and please be mindful that I try and keep the language on this blog reader-friendly. 

Please email your story along with your name (first or first/last is fine), age, a picture (need not be CF related), and a couple of your personal "CF stats" (examples could include age of diagnosis, Great Strides team name, mutation combo -- be creative) to me at: (NOTE: there is no "a" at the front). 

And just like that, we can write the next chapter of CF awareness together. Happy writing, beautiful people!