DON’T GOOGLE CYSTIC FIBROSIS!


Sometimes living with CF and you’re talking to somebody who doesn’t know anything about it, sometimes we will say don’t google it. ♬ Oh you gotta breathe, breathe, breathe, breathe ♬ ♬ Let it go and let it be, be, be ♬ Good morning. Good morning. And are you ready for today’s video? We are going to… [laughter] Are you ready? [laughing] That reminds me of when we sat down…when we filmed…oh my gosh! What! What are you talking about? We were in the downstairs apartment. Okay. And we set the camera up on like, a stack of pears. [laughter] And we, we were filming like, our first ever sit-down video. Oh… And we started filming and I was like, scratch that. Like, I don’t know. I said something weird. It was- Kind of like I just said something weird like, welcome to the video or whatever. We’re ready. I don’t know. We are ready because we have our palm tree. Apparently, it’s, it’s part of our video. Well, I mean, I have to say I was doing some yoga downstairs, and I was laying under it and looking up and they were just arching over me. It was so peaceful, but that has nothing to do with this video. Here’s the question. Is it offensive to you if somebody without CF wants to learn more about it? For me, it’s actually the exact opposite. I feel really honored and respected, in a way, if somebody shows interest in learning more about what I’m living with. I guess there is that one pushback that I often hear… which is… Sometimes living with CF and you’re talking to somebody who doesn’t know anything about it, sometimes we will say don’t Google it. Oh yeah. I’ve heard that before. Yeah, I think there’s a level of the desire for people, we want people to ask questions about CF. We love, I mean, part of the Frey Life and what we do here on the internet is communicating to people who don’t know anything about CF and we want people to be interested in it. Um…but- But the danger of, I don’t think, I don’t, I don’t think I’ve ever said like, don’t google it. But I think the danger, why some people say that is you might google it and get like, a really outdated webpage or something like that. I’ll often send people to the Cystic Fibrosis foundation’s page on like, what is cystic fibrosis, because it’s kind of a distinct layout of like, boom-boom-boom. But… I usually send people to Mary’s video called “What is Cystic Fibrosis”, but you know. Shameless plug. I’m just saying, I think, for…. kinda speaking for both of us, whenever we meet people who have found our videos or when we meet people and we know that they watch the Frey Life, we always ask, how did you find our videos? And often the answer that we get is… I was…uh… I knew something about cystic fibrosis, so I searched for it. Right. And your videos came up. So in many ways, I… I’m not, I’m not afraid of the googling of cystic fibrosis cuz that’s how a lot of you guys have found our videos. Because, you know, you maybe… often people hear about it first in biology or like, the genetics section because it’s kind of a case case in point of, whenever you’re studying the passing of recessive traits. Right. You know, and recessive genes, you know, all that. Yeah. But people, for a lot of people that’s like, what they know about it. And so we want people to be interested in learning more. Yeah, and I mean, when I first meet somebody, say it’s somebody on an airplane. Okay? Say I’ve got a mask on, I’ve got oxygen on, and I’m coughing my brains out, and somebody’s like, are you okay? And I’m like, oh, yeah, I’m fine. It’s not contagious. I have cystic fibrosis. I’m fine with telling that, because they probably are scared that I have like, horrible contagious pneumonia or something. So anyway, when I say that and then they’re like, oh, interesting. Well, I usually ask, have you ever heard of cystic fibrosis? Do you know anything about it? And that gives them the freedom to say no, I’ve never heard of it. And… I then tell them more about it. So if they’re interested to hear more, I really am like, honored. I’m like, hey, they could have just said I don’t know. Turn their back to me or something. I don’t know! But I really am interested, er, I’m thankful when people are interested and to think about a quarter of a million people who have pushed the subscribe button… Not all quarter of a million come along on our daily adventures with us but, a quarter of a million people were… willing to say hey, that’s kind of interesting or, I’d like to learn more about that or… I know somebody with CF and I didn’t realize it could look different in everybody’s life or whatever and… And I think that that’s probably… is something about Mary that she loves sharing about her CF and what her journey is. I know some CF patients are more private about their… Yep. Personal journey and… they’d rather, you know, not talk about CF and… And Mary has times where she’s just like, I just want to talk about other stuff and or say, if she’s… in that public setting, say on a airplane or something, and she’s just not feeling well and… somebody were to ask, well, what is cystic fibrosis? I mean, sometimes there’s just like, not that energy to be able to… spend the time talking about it, but that doesn’t mean that she doesn’t want people to be interested in it. Yeah, and in that case, I usually will say… Oh, feel free to check out our videos online. We talk all about it if you, if you want to learn more, you know. Like, there’s always a way to still educate but not spend all the energy. But anyway, interesting question. I do think of one setting where it is offensive. Uh-oh. Oh no! What is it? It’s when all the baby doctors come in and want to learn about cystic fibrosis. [laughter] I’m just kidding. So what he means by baby doctors is… people who are studying, so maybe they are fellows, interns, residents… at teaching hospitals. They, it’s part of their learning that they come into patient rooms. And sometimes in the process of learning, as we all do, sometimes as we learn we ask stupid questions. Some might say there is no such thing as a stupid question, right? I disagree. No, I’m kidding. I’m totally kidding. But it’s just this thing where like, one time somebody came in and said, how’s your cystic fibrosis doing? I was in the hospital. So I wasn’t doing well, and that’s a very odd question. Like, she’s just like, how do I answer that? Like, how’s your cystic fibrosis? Um… But I think what I was hinting at is… Sometimes there’s the same questions that people ask, like, different ranks of people will ask the same questions over and over. But all that being said, Mary is actually a big advocate of the baby doctors coming in and wanting to learn and wanting to listen and not just go through the questions, but being like actually genuinely interested in learning about cystic fibrosis. Yeah. Or I mean, I guess learning about patient perspective with cystic fibrosis and that sort of thing, so… I was gonna say that. Anyways, you were gonna say that? Our brains are like the same. Same thing. Alright guys. Thanks for that question. And thanks for watching. And. [both] As always, we will see you tomorrow. Good night! [Peter] And good night to the Ollie boy. [Peter] Just organizing Mary’s drugs and stuff? Or are you just going to sleep? ♬♬

Comments 100

  • How's your cf doing 😳 how do you think it's going…im in the hospital 😂

  • I was 15 in 2014 biology class when i found your video

  • I don't Google it but I You Tube it !! Much better information with real people who have it. Student Dr's are learning, that's why their still studying, so It's important that they learn well. All questions welcome for sure.

  • lol i have cerebral palsy and literally one of my doctors one time my primary care so I don’t see her often she was like how is your cerebral palsy going and I’m like it’s a progressive disability lol it’s going

  • You showed up in my recommended videos almost four years ago. I think because I follow a couple other people with chronic illnesses. I didn’t know very much about cystic fibrosis. What kept me coming every day, and had me watch all your previous videos from the beginning, was your faith. Your outlook on life, a life that isn’t easy, your joy in the Lord, your love of each other. Mary, your joy and love of children, animals, reptiles. Yes yes yes!!! And learning more about service dogs. The three of you are amazing.

  • I found them by looking up service dog videos. Never have I looked back, Mary’s joy is a huge lift for me.

  • I found this page kinda by accident I use follow jaq who has Ed's but she past away from compication from feed tube couple weeks ago all of sudden your page popped up and became hooked I dont have illnesses but I'm interested people who living with it and has such a positive relationship it something you can admire

  • Praying today went well. That your strength is preserved. That God supernaturally intervenes. ❤️

  • I am curious about CF. I only know what you all show. I went to WebMd, but the info was limited. I got interested in it when some doctor said my skin condition was linked to CF. It gets old when a room full of interns come in. I had a baby doctor google one of my conditions right in front of me. I got a good laugh. I had another ask if I looked because of an accident.

  • When we found out that our fourth child is very likely to have CF, the team of doctors who were supposed to be giving us info about CF were almost funny.. we already had one child and an adult cousin with CF so when this young doctor says people who have CF don't usually live very long, I was like seriously you need to do some studying 😂if I had been depending on that team for my knowledge I would have totally freaked out 🤪 I do hope that they are not telling other parents what they told us..

  • “Baby doctors” hahaha that’s hilarious. I am a dietitian in a pediatric teaching hospital and totally call them that too!!

  • While I was in labor with our first child, a medical student was sent in with a questionaire full of questions for him to ask me. One problem was he was Chinese and didn't have a full grasp of the language (because he had a chinese-english dictionary in his lab coat pocket). I'm trying my best in between contractions that were coming pretty fast to answer them. When he got to the one about why do I wear glasses, I lost it and said "Because I can't see with out them!!!" My husband told him that was enough questions. Thankfully.

  • I just took pics with my Frey Life items and used #thefreylife on instagram. Is that the right way to let you see what I have done with your wonderful merchandise? I love you guys and I am praying for you both. God promised us peace and comfort in our time of need and I pray that God will surround you with Angels to strengthen you and sing you lullaby's at night so that you get restorative sleep during this time.

  • I had to go back and rewatch the video "FIRST DAY IN THE HOSPITAL | WHAT IT'S LIKE FOR THE PATIENT" where Peter pretends to be a doctor asking you all the question at the hospital because that was soooooooo funny!

  • Found y'all through Instagram. One of my childhood besties lives with C.F. I've known her since kindergarten, and she will be 40 this year. So lifelong friendship.

  • I found you because of Ollie 🙂 I was binge watching service dog videos and I fell in love with you two.

  • Who sings the intro song?

  • You 2 look exceptionally happy and well today!

  • i don't think, "how's your cystic fibrosis doing?" is a weird question at all. it's the same as asking, "how are you doing?" (knowing you have CF). it's a question that says, "i care about you, how is your disease going, how are you feeling?"

    i guess we all ask "silly" questions from time to time, but for the person who asks, it's not silly at all, so you just have to bear with "those people." 🙂

    just like the person below who commented that someone asked her how long she'd had CF and she answered, since conception. that was kind of a smart-alec answer to a genuine question. then she says, the questioner walked away feeling rather stupid, and i thought, yeah, but that's because you made her feel stupid with the way you answered. i think the point is that you have to cut people some slack. that's something that i've learned over my almost 60 years on this planet. treat people kindly and gently, even if they ask "stupid questions." and believe me, i've asked my share of stupid questions, i am sure!

    i love you guys. GOD's blessings on you and your families. i'm praying for you.

  • Miss you guys, hope all is going well.

  • Oh, I have had those Baby Doctors before. It's great that people want to learn more about CF or even asthma. But at the same time, I hate the way that they just assume things. Like with me I have 75 percent Breathing capacity and some of those doctors think that I am not trying enough. Like when I had surgery for my gallbladder back in 2014, I had one baby doctor say that I needed oxygen because of my capacity was only at 85 percent at the time. My doctor who was my surgeon said do not give her oxygen unless she needs it. The baby doctor fought with my doctor saying that I was being treated wrong etc. But that's what asthma and CF does. I am glad you guys are doing these videos cause it helps others learn more about CF. I am grateful for you both. I pray for you both daily and I have learned a lot from you and u are my inspiration for fighting for my health and my care.

  • I don’t even remember how I discovered the frey life, but I’ve been blessed every single day since. I’ve seen pretty much every video, learned a lot about CF; and most importantly how to embrace life with joy and grace. Thanks to you three, (Ollie included). Lol. Praying that this week goes smoothly for you guys. ❤️

  • I found you from a dollar tree hack…. and I’ve been with you both ever since!

  • I found you because of Oliver. It has been very interesting learning about CF through you. It has been an awesome plus that you guys are Christians! You have faith in God but you also have faith in your cf team that they will take care of you. I have always thought doctors are just another tool in God’s tool box.

  • I totally get this – my condition is super rare and not very well understood, and sometimes I really would rather explain how it really is for me. ALSO! I’d rather not know that an average person knows about the way my paralysis affects my bladder and bowel function!

  • 😂 Baby doctors… I have been a pediatric nurse for over 27 years at a teaching Children's Hospital. I know what you mean. And…. A long time ago I was a baby nurse. I remember caring for CF patients back then and I was so intimidated because they knew so much more than I did. I learned to really listen and respect their routines, we were a team!

  • I have learned so much by watching your videos. I didn’t really know that much about CF. So thank you for sharing your story. I really don’t know how I found your channel. It just popped up one day. I am praying for you this week. Jackie from Indiana

  • I was sitting here trying to figure out how I came across your video. But thankful I did. All those years ago I have Lupus. So from your perspective of plugging through life with a positive faithful attitude. Has helped me walk my road. Love in Christ from Oklahoma

  • The baby doctor thing made me laugh. I go to a teaching clinic for doctor's appointments and every time there's a new resident, they will come listen to my asthmatic lungs. XD

  • don't google! Though my niece googled and said "Hmm, it sounds like I have Lupus!" and everyone laughed and was "No, it's never lupus!" (It was!). She's doing very very well, and living a terrific life, but the family joke it, "Don't google, you'll end up with lupus!"

  • I found you videos searching about device dogs. I don’t know anything about CF until I found you guys I’ve been watching every day for a long time now

  • I have been a member of The Frey Family for so long now that I honestly can't remember how I found you. I think it was through Fathering Autism maybe. I do know this, I am very glad I did find you.

  • I’m 19 and have cf, there are so many questions i have for you. If you could reply to me or dm me it would make my world! Stay strong ❤️

  • I've been following the CF research journey (off and on) since 1985 when I first learned about the disease from the book & TV movie by Frank Deford about his daughter, Alex, who died in 1980. The Defords' story made such an impact on me at the time that it has stayed with me ever since. So hoping there would be a cure in Mr. Deford's lifetime, but sadly he passed 2 years ago.

  • I wish someone, anyone would be interested enough to ask me about my life-threatening MCS, and how they can help comply with my special needs [and therefore not contribute to killing me through their ignorance of using toxic chemicals in my presence and my mandatory environment, just to exist].

  • I love this question…regardlesof the condition or disability its something we all face. I'm confined to a wheelchair so when out in public its clear that something is going on. I hate being asked but the worst thing is being asked "what's wrong with you". I as a disabled person really don't feel like I owe anyone anything nor am I a public figure that desires a life like that. I just wanna always be treated like anyone else who's out and about doing life.

  • I happened upon your vlogs when I saw you on my home page, so I clicked, watched and the rest is history! I was so impressed with the Love you both have for Jesus, and then my interest inCF. I am an RN, but had little exposure since babysitting the little boy up the street from me as a young teenager. I have learned so much from you both!! So much has changed since then! He had an oxygen tent on his bed, and I had to do manual lung clearance as back The there were no vests. 💕💗💝

  • I had never heard of cf until my daughter was diagnosed so I was so confused and surprised. I found you guys shortly after that and you inspire me.

  • That is so funny 🙂 My hubby started med school when he was 22 . We now have a 23 year old in med school and we now see how young that seems . LOL

  • What degree do you have, Mary and Peter?

  • I have NF1 and I have to say don’t google it because it’s show a severe case and I have a mild case

  • I found you because I was having difficulty breathing. Done a PFT and it showed SEVERE obstruction. I’m an R.N. so I know just enough to be terrified of my PFT results. I started searching for “obstructed lungs” and your videos popped up.
    Best thing that has come out of my diagnosis is finding The Frey Life!!!!
    You two are amazing instruments of God!!!❤️❤️❤️❤️ Thank you for sharing your lives.

  • I found y’all on Facebook, my Sisters-in-law posted your chalkboard story. Love your daily videos!

  • What is your new intro song? The description still lists Praytell's "Better Together". Thanks!

  • I've learned so much from this channel you are 100% a fighter and peter is so awesome

  • 💙sending good vibes your way💙love & virtual hugs💙

    🌼have a good night🌼

  • Anyone whose dumb enough to utilize Google as their primary care physician, or to seek medical advice off of is definitely a little off. Seek care and information from a Board certified Physician. Don't be lazy, dumb, or afraid of what a Dr. can tell you. It could save your life. In today's age, most people are afraid to seek the care of a doctor. Don't be afraid, do your body the proper service it needs.

  • I look forward to and watch every one of your videos. I don't have Cystic Fibrosis or know anybody who has it. Your videos help me to learn, value and appreciate what different people go through in life. THANKYOU 🙂

  • Having a "rare" genetic disorder myself, I welcome any doctor who's willing to learn about my case! You'd think that living in a large state such as Texas, there would be more doctors who have enough experience with Elhers-Danlos Syndrome, but alas, my poor primary care provider looked like his head was going to explode today😳! He didn't know where to start because he knows there's nobody to send me to, to fix what's wrong.

  • Missed opportunity to sing the “we think the same things” song 😆

  • I found you while searching for videos about ports. The first video I watched of y’all was how to access a port! I fell down the rabbit hole then (and that was a little over a year ago!) 🥰 My life wouldn’t be the same without the Frey family!

  • I went to school with a boy in 4th grade who missed school A LOT. He never said why, but every time he came back, he always talked about how he was sick and poked with lots of needles. He was always coughing all the time, so I thought he just got “normal people” sick a lot. I always felt really bad for him. It wasn’t until years later I found out he had CF, but he never wanted to tell anyone.

  • Does anyone know the name of the intro song and who it's by?

  • I feel for you. I have autism and there are so so many misconceptions about it. I try and educate them. I have had people literally say oh sorry you have it.

  • sending love and prayers!

  • What were the odds that you and your sister have CF?

  • It’s like you guys never left lol 😂

  • Mary – just take care of each other – to hell with blogging, get thru your medical evils and get home! Love to you both!

  • I meant medical evils (not evils) but one could think of it that way too…….

  • I love you guys! ❤️ I had never heard of cystic fibrosis, and your video (cystic fibrosis story video) got me started on the Frey life family. Happy I found you and now I am hooked. I love you guys and I pray that the next two days go as smooth as possible. Praying you guys get your questions answered and praying and hoping for the best 😀

  • I know the “baby doctor” feeling!! Lol!! I usually am up for doctors learning, but there was 1 time where “my name got out”-and I had, no word of a lie, over a dozen of them turn up, 1 at a time (not in a group) in 1 day-because my consultant asked if I would be ok with a “couple” coming to talk to me/examine me-as I had a “rare”/“unusual” condition that they were studying. I tried my absolute best, but had to say no after 8-10 (I can’t remember exactly how many)-because I was sick, in hospital, and with them coming separately, it meant I wasn’t able to get any rest!!! I felt SO guilty!! Especially since my consultant said that my symptoms/examination findings maybe the only time these baby doctors get to see/examine someone with what I had-AKA an “invaluable” learning experience for them-but sometimes you have to say no when it’s getting too much, hey! I find I have to be a bit “self preserving” at times when I’m in hospital-as they are always “interested” in me! I often say-i just want to be boring-not interesting to doctors!

  • Hi sister I m 12 years old boy my name is Noor.i was diagnose at the age of 3. I live in India where didn't get any medicine or any information from doctor

  • I was NPO, on TPN and the resident came in my room and asked how my eating was? I pointed to the TPN.. the he asked me if I was drinking enough, again I pointed to my IV pole with the TPN and NS bag and again said I’m NPO! He would’ve read my chart or at least my reason for being in the hospital, so yes there are dumb questions when it comes to doctors! I’ve seen it as a nurse myself and as a patient!

  • I started using google to find links for CF because something I read in my college biology book didn’t sound quite right. I have a lot of nieces and nephews and they’re always at my house. Sleepovers, game nights, movie nights, birthday parties… you name it. My niece Alexa has a friend that has CF. And in having her spend the night at my house many, many times over the years I learned quite a bit from her parents. Medicines and when how she took them, reactions to look out for, food that don’t work with her meds, that kind of thing. We were studying recessive genes and how genetics play a part in chronic illness. I read a line that said something along the lines of CF patients not having the gene in their family. I had heard otherwise from Katy’s parents and even one of her doctors, she stayed with me after a surgery since her mom had to go out of town for work. I asked a boatload of questions then since she was with me for a week. But it was because of that and comparing what I was reading that made me research it more. And yes, I did find a few other hunts that the book was off on. CF being one.

  • I had no information about CF until watching your channel. Thanks for sharing. Thanks and you are always in my prayers. Love you guys! BTW: Happy Spring.

  • The way you love inspires me.

  • My doctor tells me DON'T GOOGLE IT all the time when it comes to my medical problems lol. Usually they are less crazy than the internet states. Or as you say Mary, everyone is different so you can't go by a web search

  • I too love when the residents stop in!! And the student nurses ^_^ … I'm an open book when talking with MDs; they can learn from me and I can learn from them.

    It might be because my city has two large teaching hospitals, but it surprises me how many people in my area know of CF. I have Chronic Restrictive Lung Disease but because I wear oxygen I'll get people in public asking me if I have CF. I answer "no" and tell them what I do have.

    The number of times its assumed I have CF can get a little annoying because I want to yell "other lung issues exist!", but it still gives me a chance to bring awareness to what my condition is and I'll always be thankful for that.

  • The first time I heard about CF I was about 12. It was brought up on 7th Heaven.

  • I’m just here because I wanted some Dollar Tree hacks. 😂

  • I have been watching you guys for years so when my friends little boy was diagnosis with it I knew what it was. So thank you. He’s three now and just got out of hospital again. He just got diagnosed with C palsy also. It’s very sad.

  • I was introduced to CFwhen I read the book "Karen"

  • I don't have CF, but I came across your site when it was recommended through another vlog site I followed last year called 'Inspiration 365'. I'm so glad I took a peek though, as I now am one of those 256K subscribers who do come along with you on your daily adventures. Hope this week is endurable for you Mary and I bet you both miss Ollie boy so much x

  • Makes sense, as medicine/medical opinions/info are is always changing, and u never know how someone may react/assume what may be going on when that is the exact opposite in reality

  • I found you guys through Christina Doherty channel. Speaking of Christina I'm hoping she and her family are doing well because she hasn't posted a video in a while.

  • I was watching videos on service dogs when I was looking into getting mine

  • I love your channel!
    I found you guys because I was feeling lonely and isolated with my service dog, so I went looking for others. I found The Frey Life and just fell in love with your personalities!! My 16 year old son watches with me, we love following along with your lives. Thank you for being so wonderful!!

  • Oh it would be on my bucket list to meet you guys! Mary I feel like I'd talk to you the whole plane ride.

  • Therd are no stupid queations, but there are a lot of inquisitive idiots lol

  • I found you when I was diagnosed with COPD. I was searching for information about it when I saw your channel. My son's best friend died a few years ago after a double lung transplant. I knew him pretty well, but I never really understood what he was going through. You have opened my eyes to CF. I had a PFT run last month and I watched how you did it so I would know what to do.

  • I went to first grade with a girl with cf she was so sweet coughed like all get out and had bad teeth from antibiotics her and I were friends and I asked her all the questions, many years later my then bf told me about his best friend who had cf come to find out they were siblings… Small world kinda… Turned out every other child of ten had cf. Sadly things were different back then and they've all passed on. We were born in 1962 and her brother was born in 1964… So thankful for the strides cf has gotten so many new treatments up to including transplant. I just love you all, and think the world of you Frey's! Hope all is well… Been praying for you!

  • I had a friend in my teens who had CF. All I knew about it at the time was that he coughed a lot, got sick all the time and wasn't likely to live to adulthood. That was back in the late 70s so there was little hope at the time.
    I'm so happy to know how much things have improved since then.

  • Google illnesses for basic information. But then speak to the people who have it and learn what it really means.

  • Hi … Mary & Peter And Oliver …

  • "Baby doctors"😄. I remember how a baby doctor once wanted me to sign the papers before my child went into surgery (again). He didn't even look at me when he said business-like: "You have to sign here that you are aware that your child might die." – I smiled at him, bared my teeth and explained how lucky he was that I was an experienced hospital-mother and not a newbie. I really made him understand that you never ever put it like this in front of anyone entering any medical procedure at all.

    By the way: we call the pre-surgery papers the "funeral papers" in our family because you always have to agree that your child or you might die in the worst case scenario …

    I like to know before a procedure if the bad things have happened. And when the doctors try to convince me that the bad things happen very rarely, I insist that I want to know that they have experience in knowing what to do – if the bad things happen. If it's a large hospital, they should simply have hardwired routines for bad stuff. If they say they've experience with it and know what to do because they've walked the walk – then I trust them.

    Kind regards to all of you here and especially all the best wishes for Mary and Peter during this week!

  • Oh my gosh I call them baby doctors too. It confuses people 🙈🙈 lol. I have EDS and all its evil side kicks and I totally relate! Love your videos! Sending love your way!

  • My husband has a rare heart defect. He said the students were the worst. (He had two surgeries as a child). They would come in and check his blood pressure in his legs because it is different on each side. On one side it is really hard to feel a pulse or get a blood pressure. He said they would pump the cuff up so high it would be painful.

  • “Baby doctors”, “baby nurses” 😂 😂 😂I always know the look, a doctor says we have a student …. who would like to interview, write a paper, etc etc. Oh my know that.

  • Hi guys, I just wanted to leave a quick comment to say that I found your channel because I was interested in CF. Someone I went to school with who was a couple of years below me had it and unfortunately passed away when I was still at the school. You guys have inspired me to complete an assignment for my BA degree in Childhood Studies about CF. We had to make up a case study about a child and how best to support them in the setting etc and it came back with one of my highest marks so I just wanted to let you know about that. Thank you 🙂

  • You may have answered this in a vlog, but do you know if Peter is a carrier for CF?

  • One question I would love to ask is… Mary does it make you feel better on a daily basis doing your vlogs or sometimes do you think you just don't want to do it that day?? Your both always so smiley and happy that I believe it may be somewhat cathartic for you 🙏 blesses to you both, hoping for maybe a quick answer but also knowing you guys are so busy it probably won't happen xx

  • I found your channel because my husband and I were thinking of becoming foster parents to children with special needs so I was looking at the day in a life of people with different diagnosis.

  • I think we need sympathetic medical staff that have empathy and also more awareness

  • My bff has cystic fibrosis I help her any chance I get I love ❤️ her so much she’s awesome

  • I think it's interesting that people with rare illnesses choose to either try to educate people about what having their illness really means or to hide that they have an illness from everyone around them. I have heard many of the same things you said here about CF also said about Ehlers Danlos Syndrome. Google can sometimes do more damage than help as people, including doctors, see old criteria and naming conventions and insist that the new ones are wrong. I always encourage baby doctors/nurses/PT to join in my appointments so that they can learn more and even started a YouTube channel on my business page to try to educate people about it.

  • I’m 20 with cf , i love watching your videos , your faith and positivity really help me get through my daily struggles with it ! Love you guys ! ❤️

  • I came across your channel not searching for this type of channel and only knew that CF was a lung disease. I subscribed to learn more about it.

  • I have had some similar experiences with the "baby doctors" myself. I have ever Lupus, which caused me pneumonia on a very bad level. So almost every time I went to the lung doctor, a "baby doctor" would come. Now that I think about it, I think it was hysterical the way they had to examined me. I was younger then, so I found it annoying. But now I find it hilarious. I'm sorry, this is probably very off topic, but I just wanted to share. Praying for you both! 💜

  • I go through “baby doctors” a lot because my son was born with Esophageal Atresia Type B which is very rare and we run into a lot of doctors who have never seen a case before. They always have questions and wanna go back and read through all of his files and look at his xrays because his stomach had to be moved up behind his right lung to be able to connect his esophagus to his stomach. I usually just smile and go along with it because I completely understand the curiosity but sometimes I just wanna scream “go away and find me somebody who understands what’s going on!!!!!” My son turns 10 this month (it’s August. I’m trying to catch up since I fell behind a couple of months because of my kids but I’ve been with you guys pretty much from the beginning 😊) and he knows more about EA then a lot of doctors do. He loves to go up to people and introduce himself like “hey, I’m jack! I’m super rare” 🤣🤣 Oh the looks I get after he says that 🤣

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