Patients Will Test Digital Platform to Manage CF-Related Diabetes (CFRD)

By Janet Stewart

Attain Health will partner with DarioHealth, a digital health and big data solutions company, to test its Dario Engage platform to monitor blood sugar levels in cystic fibrosis (CF) patients with CF-related diabetes (CFRD). Attain Health provides integrative health coaching for CF patients.

CFRD is an unusual form of diabetes estimated to affect some 30,000 CF patients in the United States and 70,000 worldwide. Experts say that the hyperglycemia (high blood sugar levels) seen in CFRD patients results in higher rates of bacterial lung infections, and an increased risk of death.

“Effective diabetes management in cystic fibrosis patients is critical, as there is a sixfold increase in mortality among cystic fibrosis patients who have diabetes as compared to those who don’t. The increased risk of mortality from lung infections is correlated with hyperglycemic events,” Kat Quinn Porco, founder of Attain Health, said in a press release.

The three-month pilot study will include real-time tracking of 12 patients with CFRD using the Dario Engage digital platform, which includes a blood sugar monitoring device that transmits readings to the clinic. Attain Health will pay for access to the Dario Engage Dashboard to monitor participants.

The app is designed to help clinics detect blood sugar trends that could lead to disease progression. Disease management is also expected to be improved by DarioHealth’s ability to provide health education content via the app.

“We are very excited to move forward with DarioHealth in exploring the benefits of digital health solutions for patients living with cystic fibrosis. We chose to work with DarioHealth because of their platform’s patient-centric approach, ease of use, real-time actionable data, and their very favorable reputation in the diabetes market,” Porco said.

The companies plan to jointly present preliminary findings at the North American Cystic Fibrosis Conference Oct.18-20 in Denver. Final results are expected in December.

Attain Health plans to obtain grant money for continuous use of the DarioEngage program with up to 200 patients a year.

“By piloting this study in partnership with Attain Health, DarioHealth is taking a leadership position in addressing CFRD by deploying what we believe are the best digital health management tools on the market today. This agreement and pilot study mark DarioHealth’s foray into chronic disease treatment markets that overlap with and expand beyond the treatment of diabetes, our company’s first treatment indication,” said Erez Raphael, president and CEO of DarioHealth.

Original article here.

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?

Managing CF-Related Diabetes on the go

In this Cystic Fibrosis Wind Sprint, Jerry Cahill gives his tips and tricks for managing CFRD post-transplant. He finds that checking his sugars pre and post workout helps him keep his sugars stable. He also keeps water, candy, and sugar pills in his car in case of emergencies.

Continue reading Managing CF-Related Diabetes on the go

Medical Records Are Crucial — By Beth Sufian, JD

In this blog we provide information related to medical records and their importance to a person with CF.

Nothing in this blog post is meant to be legal advice about your specific situation and is only meant as information.  

Medical Records Are Crucial

Detailed and accurate medical records can help with a variety of issues. Medical records are important for those applying for Social Security benefits or undergoing an SSA Continuing Disability Review. Continue reading Medical Records Are Crucial — By Beth Sufian, JD

Trying to Reduce Inflammation

By Andrea Eisenman

I am not into fads, especially when it comes to food. I feel my life is complicated enough having cystic fibrosis and a bilateral lung transplant. There is a lot of time spent on taking medications, checking my blood sugars for diabetes and Continue reading Trying to Reduce Inflammation

Bid to extend cystic fibrosis patients’ lifespan

http://www.irishexaminer.com/ireland/bid-to-extend-cystic-fibrosis-patients-lifespan-414380.html

Scientists from the North are hoping to develop new ways of helping cystic fibrosis patients live longer. Continue reading Bid to extend cystic fibrosis patients’ lifespan

Prometic’s PBI-4050 To Target Cystic Fibrosis As Its Next Orphan Indication

http://www.newswire.ca/news-releases/prometics-pbi-4050-to-target-cystic-fibrosis-as-its-next-orphan-indication-561768451.html

• Majority of cystic fibrosis (“CF”) patients develop diabetes and liver steatosis
• PBI-4050 shown to reduce fibrosis in the lungs, pancreas and liver in preclinical models
• PBI-4050 confirmed to reduce glycated hemoglobin in type 2 diabetes Continue reading Prometic’s PBI-4050 To Target Cystic Fibrosis As Its Next Orphan Indication

Pancreas Transplant for Cystic Fibrosis Patients with Exocrine Insufficiency

An analysis of organ transplant records between 1987 and 2014 suggests that cystic fibrosis patients who lose pancreatic function are failing to avail themselves of operations that could replace their damaged organs and restore their ability to digest food and manage blood sugar. Continue reading Pancreas Transplant for Cystic Fibrosis Patients with Exocrine Insufficiency

New Combined Pancreatic Islet and Lung Transplantation Procedure for Cystic Fibrosis Could Improve CF-related Diabetes

A new clinical trial for Cystic Fibrosis is now recruiting participants aged between 18 to 60 years old with end-stage cystic fibrosis (CF) and severe CF-related diabetes (CFRD). The study is entitled “Metabolic Efficiency of Combined Pancreatic Islet and Lung Transplant for the Treatment of Continue reading New Combined Pancreatic Islet and Lung Transplantation Procedure for Cystic Fibrosis Could Improve CF-related Diabetes

Clinical Trial Alert: Prevention of CF Related Diabetes Using Sitagliptin

Currently Enrolling (According to clinicaltrials.gov)
Locations: Georgia, Tennessee, Ohio and Quebec Canada
http://clinicaltrials.gov/ct2/show/NCT00967798?term=cystic+fibrosis&recr=Open&rank=12

Acute systemic hyperglycemia causes oxidative stress and a pro-inflammatory response. The pro-inflammatory cytokines induced by hyperglycemia are toxic to islet insulin producing cells, and Continue reading Clinical Trial Alert: Prevention of CF Related Diabetes Using Sitagliptin