WVU Mountain State Cystic Fibrosis Center

WVU Mountain State Cystic Fibrosis Center WVU Mountain State Cystic Fibrosis Center
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As a chartered National Cystic Fibrosis Foundation member, WVU’s Mountain State Cystic Fibrosis Center has more than a decade of experience caring for children and with this debilitating disease. Our leading-edge research combined with our team approach results in the highest lung function for children with CF in the state. Because CF often affects many of the body’s organs and functions, and related complications can vary by patient age, our CF experts, other medical specialists, geneticists, counselors, and families work together as a team. This multi-specialty team approach ensures that the most comprehensive care is provided to each patient. Recognized as a CF site for excellence and leadership in CF care, the Mountain State Cystic Fibrosis Center is one of only 18 Cystic Fibrosis Foundation Therapeutic Development Network Centers in the U.S., reflecting our expertise and leadership in CF research.

Absolutely fantastic session at NACFC. Building and Enhancing Care Partnerships: Skills and Strategies for Health Care P...
10/19/2018

Absolutely fantastic session at NACFC. Building and Enhancing Care Partnerships: Skills and Strategies for Health Care Professionals. Wonderful discussion with a provider and patient panel.

Gunnar Esiason
10/19/2018
Gunnar Esiason

Gunnar Esiason

Day one of the North American Cystic Fibrosis Conference is in the books! Here's my recap... things I LOVED, things that made me scratch my head and more from Day 1 of the conference, from infections, to exercise, alternative remedies and more! Remember the Salty Cysters and I will be recording LIVE podcasts throughout the rest of the conference over on the Boomer Esiason Foundation's page! #cysticfibrosis #NACFC #NACFC2018

http://www.gunnaresiason.com/north-american-cystic-fibrosis-conference-day-1-recap-podcast/

Good morning from Denver! We are beginning Day 2 of conference and we’re so excited to be learning all the new advance...
10/19/2018

Good morning from Denver! We are beginning Day 2 of conference and we’re so excited to be learning all the new advancements in CF care!

We are so proud of Erin for presenting at the North American Cystic Fibrosis conference! Way to represent mountain state...
10/18/2018

We are so proud of Erin for presenting at the North American Cystic Fibrosis conference! Way to represent mountain state CF center!!

10/15/2018
WVU Health Sciences

WVU Health Sciences

It's flu season! What does that mean? How can you stay protected?

It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason B...
10/12/2018
It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason Blog

It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason Blog

Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just...

Gunnar Esiason
10/10/2018

Gunnar Esiason

It's #WorldMentalHealthDay and while my 'social' presence may not show it, I have suffered from #cysticfibrosis related #mentalhealth issues for the better part of my life.
- anxiety
- stress
- feelings of guilt
- loneliness
- intense pressure
- frustration
- nightmares
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It shouldn't come as a surprise to you, but medical trauma leaves not only physical scars, but also emotional ones, too. Over the past 5 years, I have gone through more than 20 invasive medical procedures and have seen my health decline far more rapidly than I ever thought it would
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People living with CF are at a significantly greater risk for mental health problems than the general public, and I'm no different than the statistics show. For many years, mental health was overlooked in the CF population and it's starting to take its toll as we grow older. Adults living with CF, like myself, have been through hell and back... and many of us do not have appropriate resources at our disposal to help us sift through years of horrible medical experiences, increasing illness and the mayhem that comes along with chronic illness.
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From the outside, it may not look like we're weathered souls who have seen the gates of hell, or have had to learn to come to grips with terminal illness... but we have. Mental health is just as much a part of cystic fibrosis as respiratory health is.
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If I've learned anything in working to remedy some of my issues, it's that it is okay to ask for help (from care teams, families, friends, etc.). Medical trauma is a real thing, and it was very validating to learn that I wasn't alone in failing to effectively cope. Utilizing what few tools we have for people with cystic fibrosis dealing with mental health issues has helped tremendously, but we still have a long way to go. We desperately need more effective treatment plans and diagnostic instruments.
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Finally, if you're living with chronic illness and think you might be struggling with mental health problems, ask for help. Push your care teams and the organizations representing your community to prioritize mental health and to search for new ways to help patients cope

Anyone who is interested in live streaming the 32nd annual North American CF conference can enroll below! The dates of t...
10/10/2018
The 32nd Annual North American Cystic Fibrosis Conference (NACFC) Livestream

Anyone who is interested in live streaming the 32nd annual North American CF conference can enroll below! The dates of the conference are October 18-20.

The North American CF Conference (NACFC) is a scientific and medical conference for professionals in the field of CF research and care. This...

Hill-Rom
10/01/2018

Hill-Rom

It's #MonarchMonday! Enjoy the freedom...and the view! @cf_adventurerlife.
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The Monarch® Airway Clearance System.
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#wanderlust #mymonarch #cysticfibrosis #cf #cysticfibrosisawareness #cfwarrior #65roses #sixtyfiveroses #airwayclearance #hillrom

The Monarch is here!
09/28/2018
Monarch Airway Clearance Vest Makes Traveling So Much Easier - Gunnar Esiason Blog

The Monarch is here!

I have had my Monarch Vest for about 5 months or so now, and the absolute best part about it is how stress-free traveling has become. Cystic fibrosis should never serve as a deterrent to informed travel choices, but I’ll be the first to admit that chronic illness can definitely be a stress point. ...

If you would like to try the Monarch, or get more information, contact us!
09/25/2018

If you would like to try the Monarch, or get more information, contact us!

Psst...People who own the Monarch® System rated their likelihood to recommend it to a friend as 9.8 out of 10.* Pass it on!
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* Data from Hill-Rom surveys to those who have received a Monarch® System, May-July 2018, with 10 being extremely likely and 0 not at all likely to recommend.
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#truefact #mymonarch #cysticfibrosis #cf #cysticfibrosisawareness #65roses #sixtyfiveroses #airwayclearance #hillrom

Important information on the Vog Masks.
09/20/2018
Which Respirator I use and Why - Gunnar Esiason Blog

Important information on the Vog Masks.

Yesterday I posted this selfie from my flight to Boston: A few things to note: Grown men do, in fact, take selfies My choice in surgical mask is a bit… unique Airplane cabins are not conducive to people over 6’0 I’ve since gotten a number of questions about the mask. Generally I use a mask…

YOU'RE INVITEDPeople with CF age 18 and older are invited to BreatheCon, a virtual event created by and for the CF commu...
09/05/2018
BreatheCon

YOU'RE INVITED
People with CF age 18 and older are invited to BreatheCon, a virtual event created by and for the CF community.Visit cff.org/BreatheCon For more information and to register

The third annual BreatheCon is a two-day event for adults with cystic fibrosis that will provide a virtual space to connect, share, participate in fun activities, and learn from others with CF. BreatheCon will take place on Sept. 28-29, 2018.

08/15/2018
Growing WVU Medicine Children's

The new WVU Medicine Children's commerical, featuring one of our very own CF Doctors!

Coach Dana Holgorsen and former WVU Quarterback Jeff Hostetler joined us to kick off the campaign for the new WVU Medicine's Children's Tower and Women's Pav...

Dr.Moffett and Dr. Pastuch presenting during WVU department of Pediatrics grand rounds
08/15/2018

Dr.Moffett and Dr. Pastuch presenting during WVU department of Pediatrics grand rounds

Cystic Fibrosis Foundation
08/11/2018
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Learning that your child has cystic fibrosis can be overwhelming, scary, and so much more. Today, Elaine Ruh, who has a toddler with cystic fibrosis, shares that while she and her husband were initially shocked by the diagnosis, they are moving forward with an entire team of supporters.

Cystic Fibrosis Foundation
08/07/2018
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Exciting news for the cystic fibrosis community! The U.S. Food and Drug Administration has approved lumacaftor/ivacaftor (Orkambi) for children living with CF ages 2 to 5 who have two copies of the most common CF gene mutation, F508del. Today’s approval means that about 1,300 additional children are eligible to receive the drug.

Cystic Fibrosis Foundation
07/31/2018
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Going on a vacation when you have cystic fibrosis can seem overwhelming, but it doesn't have to be. Daniel Niemi, an adult living with CF, shares five tips for smooth traveling when you have CF.

07/30/2018
WVU Mountain State Cystic Fibrosis Center

WVU Mountain State Cystic Fibrosis Center

August 15 Virtual Event - CF MiniCon: Transplant

Adults with CF and their family members and caregivers are invited to attend CF MiniCon: Transplant from 6:30 - 10 p.m. ET on Wednesday, August 15.

This free virtual event will explore all stages of the transplant process and provide an opportunity for those who are considering a transplant, preparing for transplant, or post-transplant to connect with others, learn more about the process, and share their experiences.

07/19/2018
www.cff.org

August 15 Virtual Event - CF MiniCon: Transplant

Adults with CF and their family members and caregivers are invited to attend CF MiniCon: Transplant from 6:30 - 10 p.m. ET on Wednesday, August 15.

This free virtual event will explore all stages of the transplant process and provide an opportunity for those who are considering a transplant, preparing for transplant, or post-transplant to connect with others, learn more about the process, and share their experiences.

06/05/2018
Cystic Fibrosis Foundation

Check out the story behind 65 Roses 🌹

Do you know the story behind 65 Roses Day? Since 1965, the term 65 Roses has been used by the cystic fibrosis community to describe the disease and inspire hope. Now, we need you.

Become a monthly donor and help sustain our efforts to cure CF: https://on.cff.org/65RosesDay

06/01/2018
connect.wvuhealthcare.com

WVU Medicine’s Adult Cystic Fibrosis Program receives accreditation!! Such exciting news!

It is almost here – the unofficial start of summer!  With warmer days come plans for travel.
05/24/2018
Preparing to Travel

It is almost here – the unofficial start of summer! With warmer days come plans for travel.

In addition to the typical travel headaches, people with cystic fibrosis must also consider other things related to their health. This section will discuss ways to be as prepared as possible for your trip so that you can spend less time on travel hassles and more time enjoying yourself.

Cystic Fibrosis Foundation
05/14/2018

Cystic Fibrosis Foundation

Did you know? In 1938, Dorothy Hansine Andersen, an American doctor, identified cystic fibrosis in the first comprehensive medical report on CF and later, helped create a test to diagnose it.

If any of our adult patients or family members are interested in participating in the first ever CF FamilyCon will conne...
05/11/2018
CF FamilyCon

If any of our adult patients or family members are interested in participating in the first ever CF FamilyCon will connect CF and their families to connect, share, and learn from each other. Mark your calenders for June 3!

On June 3, 2018, the first ever CF FamilyCon will invite people with CF and their families to connect, share, and learn from each other.

Cystic Fibrosis Foundation
05/07/2018

Cystic Fibrosis Foundation

Did you know? Long before it was required that all newborns be screened for cystic fibrosis, the Foundation began a public awareness campaign to help detect CF called “kiss your baby.” If a child’s skin tasted salty, it was noted that it could be a sign of CF as people with CF have elevated salt levels in their perspiration. The campaign was supported by numerous celebrities, including Joan Rivers, the Foundation’s National Celebrity Spokesperson in the 1980s. Here, she demonstrates the “kiss test.”

's cover photo
05/07/2018

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Cystic Fibrosis Foundation - Western Pennsylvania Chapter
05/06/2018
Cystic Fibrosis Foundation - Western Pennsylvania Chapter

Cystic Fibrosis Foundation - Western Pennsylvania Chapter

We kicked off Great Strides season in Morgantown, WV this morning! Our striders helped us step out on the right foot by raising over $13,000 today! Thanks to everyone who joined us to make for a fantastic day, from sponsors to volunteers, to our CF Fighters and walkers, we are so fortunate to have you as TeamMATES! Special recognition to mother nature this year for the beautiful day!

We would like to thank everyone who attended the walk today. We had a great time and it was so nice seeing everyone comi...
05/05/2018

We would like to thank everyone who attended the walk today. We had a great time and it was so nice seeing everyone coming together to add more tomorrow’s

05/05/2018

Live from Morgantown great strides

Having a great time at the Great Strides Walk. There is still time to join us!
05/05/2018

Having a great time at the Great Strides Walk. There is still time to join us!

The 65 Roses Story
05/03/2018
The 65 Roses Story

The 65 Roses Story

"65 Roses" is what some children with cystic fibrosis call their disease. Learn the story of Cystic Fibrosis Foundation volunteer Mary G. Weiss and how the story of 65 Roses began.

Jennifer and Kristen having a great time at the 12th annual CF Nutrition and Social Work Consortium #strongagainstCF
04/17/2018

Jennifer and Kristen having a great time at the 12th annual CF Nutrition and Social Work Consortium #strongagainstCF

04/07/2018

Address

One Medical Center Drive P.O. Box 9214
Morgantown, WV
26506

Telephone

(304) 293-1201

Website

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