Just Breath - Cystic Fibrosis

Fonte: http://www.ianpettigrew.com/just-breathe-cystic-fibrosis.html

But it's with a very heavy heart i had to drive back home. On the Friday I was in Florida, I got to meet and photograph one of my biggest supporters for the Portrait project - Parker Cronin. We chatted for a couple of hours, shared a couple of beers and took some outstanding photos. Parker chatted about his life, the support of his wife and family, and his Yankee baseball hat. On that coming Tuesday I had found out Parker had died due to complications with CF. I felt devastated, even now as I type this I feel choked up.  He was an outstanding person, a great supporter of our cause, and for the brief time we spent together, i considered him a friend.
Lets honour him and keep spreading awareness about cystic fibrosis and especially organ donation. Parker was only 32.

If you would like to send via Cheque, please see the information below. Please make cheque payable to:
The CF Project, 57 Kensington Ave. N., Hamilton, Ontario  Canada  L8L7N1

UPDATE: July, 2014Special thank you to Lewis Black, Julius Motal and Simon JoinsonWe have now crossed over the $2,000 mark in donations, thank you to everyone who has generously donated!!  Lots of ways to go still, but hopefully in the next couple of weeks (once some of the other CF-related fundraisers are done) this will get some momentum. Also announced last week is my new role as an Official CF Champion/Ambassador for Canada.

http://www.cysticfibrosis.ca/your-impact/hear-from-our-cf-champions/

PROJECT OVERVIEWThe goal is to photograph portraits of adults living with Cystic Fibrosis. Beside each of their portraits will be something they have personally written - their feelings, an experience, thoughts about their future, whatever. The goal is to raise awareness that people are living longer because of advances made in the medical community, advances made through generous donations and signing your donor card. The public perception is that CF is still very much a childhood disease. By putting a new face on Cystic Fibrosis we want to change the perception, and show that research and transplantation  are making a significant change for the better. But adults are dealing with other problems as well, and this is to also shed some light and understanding on the other issues adults with CF deal with.

PROJECT HISTORY
I am a portrait and fashion photographer (and art director) based in Hamilton, ON (Canada). I am also 45 years old with Cystic Fibrosis. Luckily my diagnosis is considered a milder variant of the disease, but it is CF nonetheless. I was diagnosed about 7 years ago. Before that I had no idea, but looking back on my life I always had the symptoms, just no one ever knew it was CF (like incredibly salty sweat). It wasn’t until I was unable to have children I was finally diagnosed, with F508 del and L206T mutations.

How many times have people said “Really? But you’re 45.” when I tell them I have CF. It is still assumed by many that it is a childhood disease. Life expectancy, even 20 years ago, wasn’t that great when diagnosed with CF. That has changed now, and my goal is to bring awareness that because of these medical advances, overall life expectancy has greatly increased. This is only done through research, and donations.

But what many don’t realize is adults living with CF have a whole host of other issues to deal with, many of them psychological. Besides having to deal with the main physiological symptoms of CF, studies are finding adults living longer with the disease are battling depression, Quality of Life issues, panic attacks, coping with these major life changes, self-esteem issues, substance abuse, and more. This is still very much an uphill battle, and thats what I want to shine a light on. The battle isn’t over, and this is not just a childhood disease. With more awareness comes, hopefully, increased donations and one day a cure.

What is CF?(from the CF Canada website)
Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 70,000 worldwide have CF. There is no cure. Cystic fibrosis causes various effects on the body, but mainly affects the digestive system and lungs. The degree of cystic fibrosis involvement differs from person to person. However, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, eventually causes death in the majority of people who have cystic fibrosis. The life expectancy of a child with CF has doubled in the last 30 years, and research to find a cure is more promising than ever before. Many people with the disease can now expect to live into their 30s, 40s and beyond. More than 45% of the CF patient population is age 18 or older.

Portrait, fashion and Corporate Photographer. Hamilton and Southern Ontario.

The salty girls project is changing the face of cystic fibrosis

SALTY GIRLS IN NOW AN INTERNATIONAL PHENOMENON!!

As an evolution from the "JUST BREATHE: Adults with Cystic Fibrosis" project, Salty Girls started off as a running joke, but has turned into a worldwide phenomenon. While I was doing the portrait project, I ended up photographing a disproportionate number of girls to guys (i'm still wondering what the real reason is for this). Most of the women involved were roughly between the ages of 20-40, typical for an adult with CF I guess. Then someone actually said one day, "This project is just turning out to be a bunch of hot chicks with CF".

Thus the idea of a second project dedicated to showing how beautiful those fighting CF truly are. I also saw a girl in the news who was a model, posing in her bikini with a colostomy bag as she has Crohn's Disease, and shortly after that the Canadian model with the skin disease vitiligo being interviewed by Tyra Banks. I just thought well, it's time for a model with CF! I know what these woman go through on a daily basis; everyday it's a struggle living with CF. And, to the uninformed, it is the invisible fatal disease.

Cue the "Salty Girls". Now with almost 60 women - and more to come -  this will be a revolutionary, game-changing book. These women are inspirational and fearless, and we want to show hope for those younger CFers.

SALTY GIRLS & THE CF "SWEAT TEST"

The sweat test has been the “gold standard” for diagnosing cystic fibrosis (CF) for more than 50 years. The sweat test measures the amount of chloride in the sweat.

People with CF have more chloride (salt) in their sweat than someone who does not have CF. Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, mainly the lungs and pancreas.In cystic fibrosis, the CFTR chloride channel is defective, and does not allow chloride to be reabsorbed into sweat duct cells. Consequently, more sodium stays in the duct, and more chloride remains in the sweat. The concentration of chloride in sweat is therefore elevated in individuals with cystic fibrosis.

The concentration of sodium in sweat is also elevated in cystic fibrosis. Unlike CFTR chloride channels, sodium channels behave perfectly normally in cystic fibrosis. However, in order for the secretion to be electrically neutral, positively charged sodium cations remain in the sweat along with the negatively charged chloride anions. In this way, the chloride anions are said to "trap" the sodium cations.

IN THEIR OWN WORDS:

"It took a huge amount of courage for me to be able to expose my body for Salty Girls. When I look at my body, all I see are my scars: from meconium ileus, transplant, chest tubes, g tubes, picc lines, to self-harm scars. I pick out every single thing I find wrong with my body, and compare it with other women's bodies. This led to countless of body image issues. At its worst, it would trigger depression. I grew up being made fun of the scar that is on my stomach. That scar is from the first of many surgeries when I was just under a year old. I was born really sick due to my CF with meconium ileus, and in my case, it was difficult to treat. This led to multiple surgeries & an iliostomy bag. I spent my first year at the hospital, fighting for life. Over the years, I have become insecure of my body to a fault. My stomach scar is the only scar that truly affects the way I view myself, and I think it is largely because I have faced insults while being marked with something that I have grown up with. And today, I take a stance… I will learn to appreciate, love, and nurture my body the way it should be. My body may be scarred due to all of the physical trauma I have had to endure with Cystic Fibrosis, BUT, it will never define 'ME' as a person. It will define my experiences and how it has shaped my perspective on MYSELF, and EVERYONE that is struggling. My scars tell a story of a triumph after every obstacle. My scars tell me that no matter the BS I've had to deal with in my life - I still manage to keep the fire in my spirit BURNING. That is enough to keep me going."

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"To me, being one of the Salty Girls is a statement of confidence. It tends to be more difficult to be comfortable with your body as a female when you have lots of medical scarring and foreign objects implanted in you. I personally have had a major abdominal surgery, as well as three different port a caths placed in my chest. A port a cath is not something you see every day, and it looks kind of strange, sort of like a bottle cap has been implanted under your skin. It’s harder to accept oneself as attractive when the perfection you see portrayed every day is nowhere near what your medically scarred body looks like. Salty Girls helps those of us who don’t look “normally” attractive to embrace our bodies, scars and all, and feel good about ourselves."

Fonte: http://www.ianpettigrew.com/salty-girls.html