But how do you expect me
to live alone with just me
Cause my world revolves around you
It’s so hard for me to breathe

Tell me how I’m supposed to breathe with no air
Can’t live, can’t breathe with no air
It’s how I feel whenever you ain’t there
It’s no air, no air
Got me out here in the water so deep
Tell me how you gonna be without me
If you ain’t here, I just can’t breathe
It’s no air, no air

Bronchitol, Denufosol, Vertex Drugs and Others Highlighted in Review

This month’s edition of Nature Reviews in Drug Discovery features a review of new treatments for cystic fibrosis that are in the process of undergoing clinical trials. The review is short, but it is exciting to see these drugs highlighted in a prestigious scientific publication like Nature. Some interesting content includes the future perspective on the therapies that will be most prevalent for treating CF over the next ten years, and a chart of the biggest drug development programs, shown below: [click to continue…]

Where does hope come from? When facing something as scary as life with a disease like cystic fibrosis, how do we keep the hope alive? And when reading all the statistics describing the scary realities of the disease, doesn’t it sometimes seem easiest to give up on hope altogether? But most of us don’t give up. We hold onto hope. Why?

Recently, my husband and I celebrated our first wedding anniversary. We were definitely ready to celebrate making it through our first year of marriage. It was our hardest year so far. It was also our best year so far. During that year we had some periods where we went through some pretty rough patches. There were moments when we lost hope. [click to continue…]

Earlier this month, another press release announced promising results from a Phase 3 clinical study for the drug Denufosol. The drug, taken by inhaling with a nebulizer, offers improved chloride transport in the lungs to improve mucus consistency and aid in airway clearance. This treatment functions by activating alternate chloride channels, thus increasing the main function that is affected by defective CFTR genes.

This positive announcement of another treatment for CF gives even more evidence that all the funding going towards CF research is paying off. Hopefully further exciting results will come from the additional studies on this drug, and the others in the pipeline!

You can read the full press release from Inspire Pharmaceuticals here.

Don’t know anyone with CF? Here’s why you should be interested anyway.

Another way to promote CF Awareness month is to pass information along to friends and family who may not know anything about CF. You could try forwarding a website or handing out pamphlets from your local CFF chapter. If you’re looking for some ways to help people realize why it’s important to know about CF, here are some reasons why people should care, even if they don’t know anyone with CF.

The fact that CFers are living longer and having kids means the disease will become increasingly visible in our society in the future. You might not know someone now, but you could someday. Current data estimate that one out of every 29 Caucasians, one out of 46 Hispanics, one out of 65 African Americans and one out of 90 Asians are carriers of a defective CF gene. So even if you don’t know anyone with CF, there’s a good chance that you know several people who are carriers, although they don’t know it. These carrier rates will likely increase as more CF patients have children. If two parents both are carriers of a defective CF gene, they have a 25% chance that their child will have CF. For all of these reasons, it is becoming more and more likely that one day, someone you know will be affected by CF. [click to continue…]

With May being CF awareness month, why not try to promote CF in your community? A great way to help is to participate in Great Strides, the biggest fundraiser for the Cystic Fibrosis Foundation. “Great Strides” refers to helping make great strides towards progress for cystic fibrosis research and treatments. The event varies for different locations, but usually involves forming teams to join in a walk of some distance in your community. With 3 weekends left in May, you might still have time to sign up for a local walk in your city. Check out the Great Strides website to see the schedule for walks in different cities, and learn more.

Some more ideas: [click to continue…]

New treatments for cystic fibrosis mean that CF patients are living longer, better quality lives. However, doing all these treatments can be a lot of work. Having fun is a very important part of living a healthy life, so finding new activities that are fun and have benefits to lung health can make it easier to stay healthy.

What’s an activity that can be lots of fun and involves breathing exercises? Singing! If you like music, you might want to consider taking a voice class or participating in a local chorus group or church choir. Breathing control is a big part of singing, and some studies have shown that trained singers have higher lung volumes and better lung function than normal. This may not come as a surprise, but an article in the NY Times last month discusses some benefits of singing that made me think of potential benefits to CF patients, not just because of lung function, but because of the effects on fat levels in the body. [click to continue…]

Exciting Success for CF Awareness

Previously I mentioned the importance of increasing awareness for CF with regards to politics. Since it is a fairly rare disease, it can be easy for patients with CF to be overlooked in the health care system and in political arenas that control funding for medical research. Well recently, the Senate officially recognized May 2008 as National Cystic Fibrosis Awareness Month.

It is very exciting to have CF be acknowledged this way. May has traditionally been a month for CF awareness because of Great Strides, the biggest fundraiser by the CFF, occurs in many cities through out the country during May. Being granted official recognition by Congress means that CF Awareness is in fact increasing, and that the government recognizes the importance of increasing education on the disease.

Adding in this new success of recognizing CF to all the recent advancements in medication and therapies, and the success of fundraising organizations like the CFF, I am excited and hopeful that great progress for cystic fibrosis will be in our future!

While there is no cure for cystic fibrosis, there are many treatment options that can help patients manage the disease and maintain lung function. Different treatments address different aspects of the disease. In Treatment Options Posts, I’ll describe some details of the different treatment types and how they work.

Pulmozyme is the first drug that was specifically marketed for treating cystic fibrosis. It was approved by the FDA in 1994 and has been a common treatment for many CF patients. Pulmozyme is a mucolytic medication, which means that it reduces the ’stickiness’ of the mucus in lungs. [click to continue…]

I know that this website is definitely not the place for politics, and I’m definitely not trying to go that route. That said, I thought it was pretty cool that Senator Obama mentioned CF in his speech last night after the results of the Pennsylvania primary came out. Here’s the specific quote:

“We’re here because of the young man I met in Youngsville, North Carolina who almost lost his home because he has three children with cystic fibrosis and couldn’t pay their medical bills; who still doesn’t have health insurance for himself or his wife and lives in fear that a single illness could cost them everything.”

[click to continue…]