Harmful Bacteria Replace Beneficial Ones in Gut of CF Patients

By Vijaya Iyer

Cystic fibrosis (CF) patients have a higher amount of harmful gut bacteria and increased levels of intestinal inflammation than healthy people, according to researchers.

Their study, “Altered intestinal microbiota composition, antibiotic therapy and intestinal inflammation in children and adolescents with cystic fibrosis,” was published in the journal PLOS One.

CF predominantly affects the lungs, but it can also cause gastrointestinal complications. The CFTR protein defect (the cause of CF) is abundant in the gastrointestinal tract of patients and affects the normal structure of the intestine. This defect could influence the diversity of the bacteria present in the gut (also called the gut microbiome). Continue reading Harmful Bacteria Replace Beneficial Ones in Gut of CF Patients

Omega-3 Compound Reduces Inflammation in Cystic Fibrosis Patients in New Pilot Study

By Jennifer Prince

A marine omega-3 compound comprising a docosahexaenoic acid (DHA) sn1-monoacylglyceride (MAG-DHA) may act as an anti-inflammatory for subjects with cystic fibrosis, according to a new pilot study1 published in the journal Marine Drugs. In the study, MaxSimil (Neptune Wellness Solutions; Laval, QC, Canada) increased omega-3 red blood cell levels, helped moderate the ratio of arachidonic acid (AA) to docosahexaenoic acid, and reduced key inflammatory biomarkers in subjects with cystic fibrosis. Continue reading Omega-3 Compound Reduces Inflammation in Cystic Fibrosis Patients in New Pilot Study

Bustle for muscle

by Brennen Reeves

A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.

I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.

My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.

I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.

I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?

Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.

I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?

“7years. Brennen your body needs more time to heal”
Ok.
—–
Wait,
or could it just be my body?

Advancing the GI frontier for patients with CF

The care of patients with Cystic Fibrosis (CF) has seen amazing advances in the past few years, made in part through the development of CFTR modulators. However, the recognition of the frequency of gastrointestinal (GI) symptoms in our patients is just beginning to emerge. Only recently have publications noted the excessively high frequency of GI issues. Continue reading Advancing the GI frontier for patients with CF

A Brief Historical Timeline of CF Research to Date

Cystic fibrosis care has seen such rapid advances that the average CF patient has experienced a dramatic evolution in treatment strategies in their lifetime. Here are some of the biggest milestones that shaped modern-day CF treatments.

Continue reading A Brief Historical Timeline of CF Research to Date

Results for Phase 3 Clinical Study to Treat Exocrine Pancreatic Insufficiency

https://globenewswire.com/news-release/2017/08/14/1084291/0/en/Anthera-Pharmaceuticals-Announces-RESULT-Phase-3-Clinical-Study-of-Sollpura-will-be-Included-in-the-European-Cystic-Fibrosis-Clinical-Trial-Network.html

Anthera Pharmaceuticals Announces RESULT Phase 3 Clinical Study of Sollpura will be Included in the European Cystic Fibrosis Clinical Trial Network

Anthera Pharmaceuticals (Nasdaq:ANTH) today announced that the RESULT Continue reading Results for Phase 3 Clinical Study to Treat Exocrine Pancreatic Insufficiency

More Than 16 mn Fatal Lung Infections in 2015! Know these 5 Foods to Keep Your Lungs Strong

http://food.ndtv.com/food-drinks/more-than-16-mn-fatal-lung-infections-in-2015-know-these-5-foods-to-keep-your-lungs-strong-1722266

Countries including India, China, Nigeria, Pakistan and Indonesia, accounted for over 16 million or half of the global estimated cases of a fatal lung infection called Respiratory Syncytial Virus (RSV) in 2015, researchers led by Continue reading More Than 16 mn Fatal Lung Infections in 2015! Know these 5 Foods to Keep Your Lungs Strong

What Living on My Own Has Taught Me

By Ella Balasa

Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:

Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.

I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.

I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.

Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.

Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.

Cystic Fibrosis Step by Step: Organizational Needs

Because CF has so many moving parts, it is important to keep all medications and treatments organized.
https://www.youtube.com/watch?v=ILS28TW5Hrs&feature=youtu.be

To read Gunnar’s blog, please visit www.gunnaresiason.com. Continue reading Cystic Fibrosis Step by Step: Organizational Needs

Green Smoothie Recipe – Healthy and Caloric!

By Ella Balasa

Rise and shine to start another day! Like most of us, I have limited time in my morning routine, AND I tend to slack on getting my greens for the day. Occasionally, I will eat a salad with my lunch or dinner, but that isn’t enough. The saying also goes… an apple a day keeps the doctor away…That’s definitely something we as CF patients want! Continue reading Green Smoothie Recipe – Healthy and Caloric!