4 posts tagged “cystic fibrosis”

Four actions = cystic fibrosis awareness

Posted May 8th, 2014 by

You guessed it! Along with mental health, anxiety and depression, Huntington’s disease and fibromyalgia… May is also Cystic Fibrosis (CF) Awareness Month.

Here are some quick facts about CF from the Cystic Fibrosis Foundation (CFF):

  • CF is a genetic condition that primarily affects the lungs and digestive system.
  • CF causes unusually thick, sticky mucus that clogs the lungs and obstructs the pancreas.
  • Common symptoms include salty-tasting skin, persistent coughing, frequent lung infections and wheezing or shortness of breath.
  • 30,000 children and adults in the U.S. are living with CF.
  • More than 75% of CF patients are diagnosed by age 2, and nearly half of the total CF population is over the age of 18.

Although there is no cure for CF, there are treatments to loosen thick mucus and prevent the airway from clogging. The CFF has helpful info about managing and treating CF on their website, and you can see what treatments others are taking on PatientsLikeMe.

So what else is going on for CF Awareness Month? The CFF breaks awareness down into four actions:

WALK as part of the CFF’s “Great Strides” national fundraising event.
ADVOCATE by using the CFF Advocacy Toolkit and reaching out to officials.
EDUCATE by reviewing FAQs about CF and learning about testing.
CONNECT on Facebook and Twitter using #CFAwarenessMonth and #CysticFibrosis

And continue that connecting part with the more than 1,100 CF members on PatientsLikeMe. They’re tracking their progress and sharing their experiences in the forum, and together, everyone is learning more about each other’s journeys with CF.

 Share this post on twitter and help spread the word for Cystic Fibrosis Awareness Month.


“Shine a spotlight” and raise awareness for Cystic Fibrosis

Posted May 25th, 2013 by

May is Cystic Fibrosis (CF) Awareness Month and the Cystic Fibrosis Foundation (CFF) is working to “shine a spotlight on what CF is and the progress being made toward a cure.” The CFF has a terrific awareness page where you can find info on ways to get involved, like: Walk in Great Strides, “Take Action” advocacy, and social media campaigns.    

CF-Awareness-Month-Cover-2

One creative way the CFF is asking you to donate to the cause actually doesn’t cost you a penny. They’d like everyone to “donate your Facebook cover image.” The picture that you see in this blog post can be downloaded on the CFF website and then uploaded onto your own Facebook page to help raise awareness.

If you’re living with Cystic Fibrosis, find others just like you in our growing community of more than 1,000 CF patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.


Recognizing the Rare Disease Community’s Champions of Hope

Posted October 9th, 2012 by

PatientsLikeMe Is Proud to Be Partnered with the Global Genes / RARE Disease Project

Did you know that 1 in 10 people worldwide have rare and genetic conditions?

PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates.

PatientsLikeMe

In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if they focus, they can make a difference.”  (Click here to read about all eight Champion of Hope honorees.)

Even the Dessert Made You Think About Your DNA and the Impact of Genetics at the 1st Annual Tribute to Champions of Hope Gala

After uplifting musical performances and talks by celebrity presenters Jason George (“Grey’s Anatomy”) and Nestor Serrano (Act of Valor), the night ended with a heart-stopping, impromptu rendition of “Somewhere Over the Rainbow” performed by several rising singer-songwriters, including Chris Mann and Katrina Parker from the “The Voice,”  Elliott Yamin from the fifth season of “American Idol” and Gracie Van Brunt, a young girl battling a rare genetic disease called Shwachman-Diamond Syndrome who performed her own original song earlier in the evening.

Chris Mann, Gracie Van Brunt, Katrina Parker and Elliot Yamin (Left to Right) Performing at the Tribute to Champions of Hope

The gala was followed the next day by the 2012 Patient Advocacy Summit, a forum where patient advocates could discuss issues that directly affect them, from resources to policy. PatientsLikeMe Co-Founder and President Ben Heywood was featured on the Innovative Technologies and Platforms panel, sharing the stage with Dr. David Eckstein of the NIH’s National Center for Advancing Translational Sciences. Discussing the topic of “Accessing the Science,” they each gave an overview of how patient registries and clinical trials are promoting change and advancing medical research.

As a prime example, PatientsLikeMe joined forces with the Global Genes / RARE Project last year to create the RARE Open Registry Project, a resource for patients and families fighting rare and genetic diseases.  What makes it different from other registries is every time you enter data into the system, you receive information back showing how your data compares to others fighting similar diseases or taking similar therapies.  If your family is impacted by a rare or genetic disease, we invite you to join the registry today


Life with Cystic Fibrosis: Three Teenagers’ Perspectives

Posted January 13th, 2012 by

Unlike most of the health conditions we cover at PatientsLikeMe, cystic fibrosis is one of the few communities where the majority of our members are under the age of 29.  In fact, approximately 60% of our 440 cystic fibrosis patients report that they either fall in the 0-19 or 20-29 age brackets.

A Snapshot of the Cystic Fibrosis Community at PatientsLikeMe

What exactly is cystic fibrosis?  A hereditary disease, cystic fibrosis causes the exocrine (secretory) glands to produce abnormally thick mucus.  This can cause problems with digestion, breathing, body cooling and male reproduction, among other things.  Most people with cystic fibrosis are diagnosed by age 2, although some are not diagnosed until 18 or older.  (The latter individuals usually have a milder form.)

Cystic fibrosis is the most common genetic disorder affecting Caucasians in the US.  It is also the most deadly due to the respiratory complications that can occur.  According to the National Institutes of Health (NIH), millions of Americans – including an estimated 1 in 29 Caucasian Americans – carry the defective cystic fibrosis gene.  To develop the disease, however, a person must inherit two defective genes (one from each parent).

So what’s it like to grow up with cystic fibrosis?  Here’s what three teenagers had to say in a recent discussion in our Lungs and Respiratory Forum:

  • “I had never had any hospitalizations until the summer I turned 16. I was hospitalized for a ‘tune up’ which barely did anything that I noticed. I went back to living life as I normally did. In high school I was on the volleyball team, in two bands and kept up honor roll grades. This past year has been the worst health wise. I have been hospitalized twice and the discussion of a lung transplant has begun. I cannot believe how quickly I went from having an almost totally normal life to living everyday worried about my weight and lungs and health.” – Female, 18 years old
  • “I have some bad days but I’ve never been hospitalized.  This leaves me wondering what the feeling is like to be spending a lot of time in hospitals. I was diagnosed when I was 4, after my mum had tried to convince the doctor for 3 years that something was wrong with me. Without cystic fibrosis (CF), I don’t think I would be the strong person I am today. CF has made me who I am, but I am the only person with CF that I know.  No one in my family has CF so they rarely understand how different I feel, like an outsider sometimes.  But all they say is ‘don’t be stupid, you’re normal.’” –  Female, 17 years old
  • “I was diagnosed at about 3 days old, and I practically lived in the hospital until about 5. Then I was only in once in awhile. The past school year I started to get really sick. And I’m currently in [the hospital] right now. It seems to be every three months I’m admitted, and I always pack a bag on my way to the doc because I know I will be admitted. Life is hard, but I’m thankful it’s not worse. I got to play some sports, and I have my best friend who supports me with everything.  It sucks to see my sisters get up and go to school without worries, and complain about little things. But then again I wouldn’t want any of them to have this.” – Female, 17 years old

This is just a sample of the wealth of experiences and data to be found at PatientsLikeMe.  Dive in today to learn more about cystic fibrosis.