CF and Menopause—I have questions…

By Georgia Brown

As a woman with Cystic Fibrosis, at 47, I am considered old—but it is a title I relish.  It means I have weathered the CF storm and I look at each birthday as an accomplishment.  But as I enter the next phase of my life, I find I have more questions than answers.

While I don’t fear menopause necessarily, I do fear embarking on this life changing phase without understanding how CF puts its unique twist on it.  And that is why I am glad that I have found the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC).  Each month the group meets to discuss issues specific to women with CF.  Then CFReSHC uses the feedback from meeting participants to help shape future CF research.  This is one way, we, as patients, pave the way for improved sexual and reproductive healthcare.  

The next virtual meeting “Hormones Across the Lifespan” will be Thursday, February 22, 2018 from 11 am to 1:00 pm EST.  Dr. Raksha Jain of the University of Texas Southwestern will discuss how hormones affect women with CF from puberty to menopause.  Then, the CF women in attendance, will break into smaller groups to discuss personal stories and identify the top three hormone-related topics that need further research.  The meeting is open to all women with CF in the United States.  For more information on CFReSHC and for login information from your laptop, or mobile device, email CFReSHC at cfreprohealth@gmail.com. Women who attend receive a $25 gift card from Amazon.  

Introducing ‘This Lung Life,’ a Column by Ella Balasa

Below is the first post of an original column that will be published once monthly. Enjoy!

Fulfillment to me means achieving a dream, pursuing a passion, striving to be happy every day, and finding joy in what I do. To say I did my best and made every moment count. I believe having those dreams and feelings of fulfillment comes from motivation. Motivation to do and be better in whatever parameters I set for myself. My motivation for life comes in the most innate form — the will to live. To live the fullest life I can, in the time I am given to live it.

Having cystic fibrosis has shaped me to want to live in this way. My motivation to Introducing ‘This Lung Life,’ a Column by Ella Balasahave this attitude has grown with each passing year, though it’s taken time to gain the maturity, experiences, and confidence to find my identity and purpose.
Continue reading Introducing ‘This Lung Life,’ a Column by Ella Balasa

How to be a Hermit in Flu Season – Top 10 Things to do to Avoid Winter Bugs

By: Beth Sufian

In the past month, many newspapers have reported that large numbers of people in the United States have fallen ill from widespread flu in every state except Hawaii.  People with CF are especially vulnerable to flu and other viruses that pop up in winter.  People spend more time indoors so it is easier for flu and viruses to spread.  I remember one of the first articles I read in CF Roundtable was by Joe Kowalski one of the founders of CF Roundtable.  He wrote about being a hermit during winter and how it reduced his incidence of getting sick.  I thought it was an interesting idea and after 18 years of doing a similar thing in winter, I thought I would share my strategies.

Here is a list of the top 10 things I do to try and reduce the likelihood of getting sick in winter. I know some people are already anxious about getting sick and this blog post is not meant to increase anxiety.  My hope is that one or more of these strategies may help some of you stay healthy during the winter.

Please share any effective strategies you use in the comments section below

1.Take Your Own Pen                                                                                                              On your next trip to the store watch as people take the pen at the checkout and sneeze or cough right on the pen. When you go to the store, doctor’s office or any other public place where you may need to sign something bring your own pen. It is easy to find pens with a stylus cap to use in stores that use a screen for signatures.

2. Take a Small Bottle of Hand Gel and a N-95 Mask                                                    If you find you have touched a surface that has been used by many like a door handle then make sure you have a bottle of hand sanitizer so that you can clean your hands.  In addition, keep a N-95 mask in your purse or backpack.  If you find yourself in a space with a person or many people who are coughing or sneezing you can quickly put on the mask.  If you feel self-conscious about wearing a mask just remember the last time you were sick and that should put those thoughts to the back of your mind.

3. Wear Gloves                                                                                                                        Wearing gloves can help you avoid germs when out in public.  While it is advised you should not shake hands with people this is a hard habit to break.  Wearing gloves allows you to shake hands and lower the risk of passing germs to yourself.  However, you need to make sure you wash the gloves frequently.

4. Step up your Treatments                                                                                               It is hard to avoid sick people if you work in an office or in a job that exposes you to the public so it is important to make sure you are doing your daily CF treatments.  In a perfect world, everyone with CF would do all the breathing treatments prescribed each day without missing any doses.  In reality, things get in the way.  Most people with CF tell me they normally skip a lot of treatments each week.  During winter it is important to reduce the number of missed treatments.  Medicine cannot work if it stays in the bottle.   People with CF often say “I do not have time to do my treatments”.  I think the opposite, I do not have time to get sick so I must make time to do my treatments.  If you are working in an office or going to school it is hard to avoid people who are sick but taking good care of yourself can reduce the chance of catching a winter bug.  Also, make sure you go for quarterly CF Care Center visits so that your CF Care team can monitor your health.

To make treatment time more enjoyable find something you really like to do and do it during treatment time.  If possible make that the main time you do the activity.  For example, if you like watching movies or playing video games make treatment time the time you watch movies or play games.  It takes discipline but can really help decrease missed treatments. Listening to music while doing treatments also helps to reduce the noise of the machines and can make treatment time relaxing.  Some people meditate while doing treatments and report it has a calming effect.

5. Avoid Crowds/ Avoid Sick Visitors                                                                             In the late 1990’s I was on and off IV’s many times due to illness.  I realized that often I finished a round of IV’s and would then go to a party or a big meeting and would be sick within 3 days.  When I started restricting my contact with sick people during winter and beyond my own incidence of illness decreased.  My close friends know they should cancel a lunch date with me if they think they may be sick or someone in their house is sick.  I still go out to lunch with friends but in winter I avoid big gatherings. For example, if my daughter’s school is having a meeting of parents I make sure I sit toward the front or back (depending on the room) on the side and not in the middle of the group.  But if I know the meeting will be in a small room with the potential of having a lot of people in attendance I send my husband to the meeting and stay home.

6. Exercise at Home                                                                                                           For me, going to a public gym or exercise class during winter makes me nervous.  I used to attend a yoga class that I enjoyed.  During the winter months half the class was sneezing and coughing and I decided that was not a good place for me to be exercising.  The same thing happened at a local gym.  Now I use yoga videos and step up the number of times I walk my dog.  I know in some places it is too cold to walk outside.  If you have to go to an indoor gym try to go at an off time.

7. Shop at Off Times                                                                                                      Once winter starts I become very disciplined about when I shop.  I love a certain grocery store in Houston that has beautiful food but it can be mobbed on the weekend and at lunchtime.  The other day I drove to the grocery store at 11 am but saw the parking lot was full.  I was tempted to just “run in” because I had driven there and needed a few things.  But I turned the car around and headed home.  I find that when the store first opens at 8 am there are very few shoppers so that is the best time for me to go.  If you work or go to school and this is not possible see if someone else can get things for you.   Some stores now have a way for you to order things online and then pick up the bagged items at the store. This fairly new service can be very helpful to people with CF.

8. No Airplane Travel                                                                                                         In the late 1990’s I was still traveling in winter. I would finish a course of IV’s and feel good and then a week later I would board an airplane and head to a work meeting, wedding or family event.  Within 3 days of returning from the trip, I would be sick and back on IV’s.  After 3 winters of this cycle of IV’s, travel and getting sick again I realized there was a direct correlation between my travel and getting sick.

My solution was to impose winter travel restrictions.  I do not fly on an airplane in January and February unless I need to travel for medical care.  This year I think I will extend my rule to mid- March given the widespread flu activity and what looks like extended cold weather in many places.  I have been restricting airplane travel since 2000 and have seen great results in terms of my health.  Also by having an absolute rule, no one feels slighted if I miss their wedding or event.  I do wear an N-95 mask when I fly on a plane in other months.  However, I found when I traveled in winter when I got to my destination (especially if the place had cold weather) I still got sick because I came into contact with a lot of sick people.

I travel a lot the rest of the year so having 2 months at home is a treat.  I just cleaned out 28 years of boxes that have accumulated in my attic.  February my goal is to clean and organize my closets.  In Houston where so many lost everything in Hurricane Harvey, it feels good to send things I do not use to those who need help.

9. Rest                                                                                                                                         I have come to the conclusion based on conversions with thousands of people with CF that people with CF do not enough sleep.  For those who work or go to school, there is always a shortage of time as a person tries to do breathing treatments in the morning and night and fit in work and school (or the other way around).  Those who are not attending work or school may find they have interrupted sleep due to coughing, low blood sugar or other health issues which results in exhaustion in the morning.  A decline in health also brings with it the need for more sleep. Sleep is extremely important and helps your body fight off viruses, the flu, and other bugs.  While it seems rare for most CF physicians to talk about the need for sleep it is very important and can really improve health and reduce the chance of getting sick.

10. Stay Connected                                                                                                               In Joe Kowalski’s day there was no Internet, Facebook or Twitter.  Talking on the phone was the way he stayed connected to friends and family during winter.  I make plans to speak to friends or to meet them for coffee or lunch when they feel well.  I also like to plan fun things to do in the spring and summer while I am in my winter cocoon.  I may have to pass up going to a party or an event in winter but I have found the reward of not being sick is worth it.  I look forward to reading of the strategies CF Roundtable Readers use to avoid winter bugs.

 

 

 

CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

CYSTIC FIBROSIS WIND SPRINT 67: CIRCUIT TRAINING 2

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF.  Continue reading CYSTIC FIBROSIS WIND SPRINT 67: CIRCUIT TRAINING 2

CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1

8 Tips For Protecting Your Lungs From Unhealthy Air

If you have a chronic lung condition, you’ll need to protect your lungs from being further irritated by unhealthy air. We’ve put together a list of ways to help protect your lungs against unhealthy air using information from the American Lung Association.

Check the daily air pollutant forecasts. 
There are sites on the Internet and cellphone apps where you can find out the levels of air pollution in your local area. Checking these daily can help you plan your week, helping you avoid being outside or limit your time outside when the pollution levels are high.

Try both indoor and outdoor exercise
If pollutions levels are high then avoid exercising outside. Either visit your local gym or exercise at home. Indoor shopping malls are good locations for indoor walking if you can’t go outside. Try not to exercise in places where there is a high level of traffic — traffic fumes can pollute areas up to a third of a mile away.

Reduce your carbon footprint. 
Using less electricity at home is one way to reduce your carbon footprint which helps to create healthy air for everyone. Reducing the number of car trips you make will also help. Travel by bicycle or public transport, or car share instead. Walk short distances instead of jumping in the car.

Don’t burn trash or wood. 
The ash and soot caused by the burning of wood and trash contribute to particle pollution in the atmosphere.

Don’t use gasoline-powered yard equipment. 
Gasoline-powered lawn mowers, trimmers, and leaf blowers all add to the air pollution and may irritate your lungs while carrying out your yard chores.

Encourage others to reduce their carbon footprint. 
Pressurize your local schools to run their buses according to the Clean School Bus Campaign. That means not leaving the engine running while waiting outside buildings and applying for funding for projects helping to reduce emissions.

Ask friends, family, and neighbors to reduce their energy use.

Stay away from smokers.
Don’t allow anyone to smoke in your home or place of work. Try to avoid outdoor places where people smoke cigarettes.

Be an advocate.
Be an advocate for healthier air, supporting local and national campaigns to improve the environment and reduce emissions.

Original article: https://cysticfibrosisnewstoday.com/2017/12/12/8-tips-for-protecting-your-lungs-from-unhealthy-air-2/?utm_source=Cystic+Fibrosis&utm_campaign=a772c5a83f-RSS_THURSDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_b075749015-a772c5a83f-71418393

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

Women with CF, we need your expertise and opinions!

Become a member of the CF-Patient Task Force to discuss sexual and reproductive health issues that affect women with CF.  As patients with CF live longer, CFReSHC is committed to patient-engaged research through partnerships with people with CF, researchers, and advocates.  Continue reading The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC)

College and CF – Spring 2018 Scholarship Recipient Guest Blog

By: Holly Beasley

Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.

I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.

College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.

All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.

Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.

An Interview: CF and Exercise

An interview with Pamela Scarborough, conducted by James Ives, MPsych

Please give an overview of the role of exercise in cystic fibrosis (CF)

We know that exercise is beneficial in helping someone to maintain their lung function, stay strong and active and maintain a good quality of life. We also know that exercise can complement ‘airway clearance techniques’ – breathing exercises prescribed by physiotherapists to help clear the lungs of mucus.

As well as benefitting lung function, exercise can help to address other complications of CF such as low bone mineral density, CF-related diabetes, low back pain, postural problems and stress incontinence.

Then, there are many other wonderful benefits such as improved mood and sleep, which is important for someone with a life-limiting condition.

Without exercise, what other methods are used to help CF patients clear the mucous that builds up in their lungs?

As physios, we use a wide range of approaches. The traditional methods that people associate with CF physio are postural drainage, percussion and active cycle breathing techniques − deep breathing exercises to open up the airways of the lungs in order to get behind sputum and get it moving so that it can be cleared with a huff or a cough.

However, we are increasingly using other techniques, for example, oscillatory devices such as a flutter or an acapella; positive expiratory pressure devices such as the Pari PEP; or different breathing exercises such as autogenic drainage. There is also a high-frequency chest wall oscillating vest, which is like a life jacket that vibrates. The aim of all physio techniques is to open up the airways, loosen the mucus, and make it easier to clear.

How important do you think physiotherapy is for people with CF? How prevalent is exercise therapy in CF treatment?

Physio is a cornerstone of CF care and has always been recognized as having a very important role to play. Even from point of diagnosis, when a child may be asymptomatic with their chest, their parents are still taught to engage them in exercise and to get them moving around to make sure they’re maximizing ventilation of the lungs and helping to move any sputum that’s there.

The wide-ranging benefits of exercise on health are continuing to emerge. Throughout my professional career, I have seen people who have come from active families and the fitter they were when they were younger, the better outcome they have later down the line; they’re still functioning at a higher level because they had that training in their younger years.

People are seeing exercise as another way to help control their health, and it is also something that’s more normal to do and that they can do socially with their peers. Someone with CF often has a huge amount of treatment to undertake, a lot of which can be unpleasant, so exercise can be preferable as it is something that can be enjoyable. Every time we see a patient, we ask them about what they are managing to do from an exercise point of view.

What are the main differences between workouts that are specifically designed for CF patients, as opposed to just standard workout routines?

We don’t know exactly how exercise programmes for someone with CF should vary from the normal population; we still need more research to prove this – so what we’re saying is that people with CF should be doing the same amount of cardiovascular exercise and strength and conditioning training as recommended in the national guidelines for the healthy population.

However, because of the factors I mentioned before − that people with CF are very likely to suffer from postural problems, low back pain, stress incontinence and low bone mineral density, etc − physios prescribe exercise programs that make sure we’re addressing these issues before they become a problem, or if they are a problem, that the need is met.

Why is it important to have a personalized exercise routine and what range of exercise routines are available on Pactster?

It is important to have a personalized exercise regime because we are all different; we all have different interests and we all have different needs. There is a lot of pressure on people with CF  to exercise for health benefits, so we must find a way to make it  enjoyable and effective for them. We need to have exercise that is engaging and does not just feel like treatment. It needs to feel like it is going to be fun, as well as meeting the patient’s needs and be easy to integrate into a daily routine.

With a lot of the workouts we have on Pactster, we have really tried to normalize exercise. We know that exercise is medicine, but we want it to be something fun and normal that everybody does. We have used physios and people with CF who are qualified fitness instructors as instructors in the videos; but we film the videos out of the hospital setting, in normal clothes and cover popular exercise disciplines such as yoga, mixed martial arts, pilates, circuits and high-intensity interval training. We are creating more videos to cater for people of different ages and interests, and throughout different stages of the disease.

We are hoping that Pactster will overcome the usual barriers that put people off exercising, like lack of time and money, but that it will also make exercise easier for people who may struggle with low mood, find it hard to get out of the house because they are dependent on oxygen or equipment, have a compromised immune system or who may be too self-conscious to go to the gym. Some people with CF find group classes embarrassing because people may turn and look at them if they start coughing.

Pactster has been designed to overcome these barriers, so that people can gain confidence exercising in their home environments and be reassured that they’re exercising in a safe way, supported by someone who understands their condition.

Zelda and Leah, two CF physios from The Royal Brompton and Harefield NHS Trust

Please give an overview of Pactster and the unique features that you bring to CF physiotherapy?

Pactster offers health-specific exercise videos filmed with specialist instructors alongside community and motivational support. Our exercise videos have been filmed with CF physiotherapists and people with CF who are qualified instructors; and have been approved by the Association of Chartered Physiotherapists in Cystic Fibrosis.

We want people to be inspired by seeing someone with the same condition as them on screen, sharing their knowledge of how to use exercise to take control of their disease.

Currently, in the videos we have on Pactster, the CF instructors are quite highly functioning, but we’re creating new videos that will include people with more advanced disease and people who are pre- or post-transplant, as well as families and kids. Even with more advanced disease, there are still so many fitness role models with CF who who are phenomenal in what they achieve  given the challenges that they face, and who have so much knowledge to share.

Pactster gives the opportunity for people with CF to workout alone or with others in a group setting, this is an important feature as people with CF are unable to meet one another face-to-face due to a risk of cross infection which can significantly impact life expectancy.

These group workouts can be facilitated by a person with CF or by a physio. The good thing about this is that it provides an opportunity for peer support, or if a physio is running the session it may have prevent the need for a hospital visit.

Group workouts are also about motivating and inspiring others as well as providing accountability, enjoyment, and the opportunity for learning. We are currently developing the behaviour change features on Pactster to make it easier to stick to an exercise regime.

Group, online workout has an unlimited number of people who are able to attend

Are there any limitations to the workouts? Do they need specific equipment? I’m guessing these are all open access to all CF patients?

In the UK, our arrangement with the Cystic Fibrosis Trust means that all people with CF, as well as their caregivers and physios can have free access to Pactster. Due to the way CF care is delivered in the UK, it is expected that anyone with CF coming onto the platform would have already been seen by a specialist in a CF centre and that they would have had conversations with their physio about the right amount and type of exercise necessary, as well as how to exercise safely.

It is expected that people come to the platform with some understanding of exercise and then they can participate in what they feel is right for them. Maybe they’ll try something they haven’t tried before because it’s been put right in front of them and it’s easy to do.

Access is free and the equipment that you need to use may vary from one exercise discipline to another. Some will require more hand weights, but you can improvise with a book or a can, for example. There’s also a kettle bell workout on there, if that’s what people are interested in. Generally, most of the exercises require an exercise mat, but not very much equipment after that.

Is it also open access to patients outside of the UK?

There is a monthly subscription of five pounds per month if you’re outside of the UK, but our aim is to try and make it free. As a British person, I believe in the NHS and I believe it is wonderful that healthcare can be free at the point of access.

I would love to make Pactster free for anyone who needs it because we want to reduce as many barriers as possible for someone exercising. Although it’s not much of a financial barrier, making payments is still a barrier for some people. We’ve got people who have signed up from other places around the world, but people are already asking whether there is going to be a similar arrangement in Germany, South Africa, or America and I’d like to find a way to make sure that we can make it free for them.

Will you expand the exercise routines and physiotherapy for other conditions in the future or are you focusing primarily on CF?

I’m predominately a CF physio by background and coincidentally, one of my best friends has CF, so I have a very strong personal attachment to creating this for people with CF and I want to see it working, being a huge success and making a difference.

I do feel that being able to offer specialized exercise videos to someone in their home is incredibly important, as well as being able to provide remote physio support and to connect people who are going through similar conditions. Once we are happy that we have CF working as well as we want it to from a behavior change point of view, as well as videos covering all stages of life from point of diagnosis through to end of life, then yes, we are looking to provide the same service in collaboration with other hospitals or charities for other health conditions.

One example, which we think would be our next step would be working with people with breast cancer as we know exercise is a very important therapeutic intervention for people with breast cancer. Also, at different points of life from diagnosis, pre-mastectomy, post-mastectomy, chemo and radiotherapy, there are lots of barriers to exercise and lots of reasons that exercise needs to be tailored at different points for different needs. The breast cancer population would be another example of a population that we’d like to support using Pactster.

What would you like to see as the future of physiotherapy treatment for CF patients, both in the UK and globally?

I would like physio to be as easily integrated into someone’s life as it can possibly be and every treatment to be as effective as possible. I believe that is about personalizing care and looking at different ways to support people in different settings − at home, in hospital and in the community. I also believe it’s about tailoring our treatment and making it the best we can through creating more of an evidence base and not being afraid to progress with things. Physio is a difficult, laborious task for someone with CF and if we can make it as streamlined, personalized and effective as possible, then that would be awesome.

Ideally, I don’t want people to have to do physio. I want there to be a cure for CF, but so long as that is not the case, then let’s make the therapy the best we possibly can. I’m excited to see where things go from a digital health point of view, because I think there’s potentially lots of different things we can do.

Where can readers find more information?

About Pamela Scarborough

Pamela has been a phyiotherapist in the NHS for 15 years, predominantly working with people with cystic fibrosis. Pamela completed a Master’s looking at yoga for thoracic kyphosis and lower back pain in CF, as well as studying adherence and behaviour change in greater detail. Here, she most enjoyed researching and presenting in those areas, as well as teaching others, sharing new information and approaches on adherence and yoga within the community.

Since then Pamela has been working on Pactster, where she enjoys the creativity of a start-up environment and is excited about the potential of digital health in improving quality and delivery of care. She finds it incredibly satisfying to see people using Pactster and finding it beneficial.