Hello guys. PCD guy here. here is my advice. Throw away anyone who does not respect you. smoke. act like a d!ck with your condition Drink pure cocoa. Its a medicine and it helps a lot. Cut off milk. Milk is a poison for people like us. it produced mucus and makes life harder. Do nasal salt water it helps a lot. Go to nature often. Try hard to control your work enviorment. This is the most nasty part but be positive. Enjoy life to the max. Life is good... i guess. Keep walking.
Hello, do you have PCD? I live in Turkey. I am a university student and I have an assignment on this subject. I want to introduce this disease and raise awareness. can you help me please? . I would like to reach a person diagnosed with primary ciliary dyskinesia. I want to do a study on this subject and raise awareness about this disease in my school. Im a physiotherapist.
hi i have pcd and my school starts next month and i'm so worried and embarrassed to cough in class and i dont take meds and do exercises so i was hoping you could show me what the meds and the exercises that can make me cough less in my day
first, i wanna say that i completely relate when you say that you feel worried and embarrassed. even now i find it super hard to open up to people about my condition, let alone cough in front of them. currently, i take albuterol sulfate nebulizer. it works for me, but i’m sure everyone’s bodies are different! the medicine is a vaporizer/liquid and i take it twice a day for 10 minutes each session. in terms of exercises i used to run. i don’t as much now, because the medicine helps a lot now and im lazy. something i would say really helps is getting an Acapella too to help vibrate the chest and get the mucus up. also, a vibrator chest helps too but it’s more awk for me idk. lastly, i find laying on my back and either doing the Acapella or not helps a LOT with coughing up. i found that a few hours after the albuterol the phlegm really starts to soften and coughing whatever i can without the Acapella is normally fine, but using it helps get everything
I just discovered your channel today. I grew up with a bad underbite as a kid I knew I was a little different but doctors said it wasn't bad enough to do surgeries but my medical wouldn't cover the procedure because it wasn't a emergency to them and I have to pay out of pocket which I couldn't afford. As I got older I could hold my jaw back just a little where my underbite was there but it didn't look to bad but I felt self conscious and I was going through pains in my face and jaw then fast-forward a few years my underbite got worse and when I turned 40 I couldn't hide it much anymore and I naturally talk alot because of my personality buy after a while talking that much took a toll on my jaw and face and now my pain is getting worse I'm slowly to the point where I want to talk less and less because of the pain in my underbite and my underbite my lower jaw is extended more and I'm at the point where I'm done trying to hold my jaw back a little because it hurts to much. I can't do it anymore and people will judge me but I'm used to it. I want surgery but the cost,recovery and side effects scare me. I think now if I go into the Dr with my bad condition they may help me with the cost. I feel very self conscious. I may just start to wear a mask in public all the time to hide my face. I'm inspired by your story. You are an inspiration I know I'm not the only one suffering with an underbite. You look beautiful with your underbite. I see you got your underbite fixed congratulations. I wish there was a underbite support group .
First of all, I’m so sorry you’ve to go through all this. You’re so strong, and I cannot even imagine having to live with an underbite for that long. Even now post-surgery my jaw is crooked, but I am much happier with the aftermath. When I had my underbite, I struggled a lot with talking, especially with certain letters like “s.” I was fortunate enough to have a majority of it covered because of how bad my jaw was, since it classified as Class III. I remember back when I had my underbite I was so happy to be able to wear a mask all the time during the beginning of the pandemic. I liked hiding it, and I wore it outside even when I ran, and everyone was a safe distance away fron me. So I completely understand where you’re coming from with the mask comment. Personally, I think now especially given the extreme effect it has on your speech, that you should definitely be able to get a majority if not all covered. I’m not sure what your insurance plan is, and how they work exactly. However, my best advice would be to spin it off as what it actually is, as something that is causing you pain and hindering your ability to live life normally. In addition, to especially stress the fact that it is not merely for cosmetic reasons. I found the surgery to be SO worth it despite the cost, recovery, and side effects. Thank you for making this comment, and it means a lot to hear that I am an inspiration for you. I know it can be really hard to live every day with an underbite, I used it as an excuse to put off important milestones in my life, and I realized after getting the surgery that I was beautiful to begin with. I agree there should definitely be an underbite support group. It would be so helpful!!
I appreciate you sharing your story. I can definitely relate with you on the struggles of having this condition. Would love to see a video on your tips and suggestions on dealing with our condition. Wish you the best
Thank you for sharing! My 6 month old son was just diagnosed with PCD just a couple weeks ago (diagnosed through biopsy) so we are just starting on this journey.
Of course, and you’re welcome! I wish both of you the best of luck on this journey. The fact he was able to be diagnosed so young makes me so happy to hear. I was in high school when I found out, and just being able to put a name to my condition helped me feel a lot better both mentally and physically.
I’ve had pcd my entire life as well, have you also had to do the percussion vest 2x a day plus hypertonic and a tobi cycle? I know pcd can vary in severness depending on the person, but for me it’s pretty serious. Just curious that’s all, don’t feel like you need to disclose anything I understand it’s personal, I’m just pretty open about it all.
I appreciate your comment. You’re actually the first person I’ve “met” that has PCD as well. I have not heard of the hypertonic or tobi cycle, however, I used to wear a vest. Currently, I use a vapor like machine to breathe in my medication and I try to cough a few times daily in order to clear my best. I hope this clears up any confusion !!
@@alexikari6507 Hi, nice to meet you. Well, I am trying to write it in English my best but hope you don't misunderstand. because of my english not good enough. I ask this because I have a daughter who is facing the same difficulties. You used to use the vest, but now you don't you use it? We're considering buying the vest, but we're worried because the price is too high and its performance. So is there a special reason why you stopped using it?
@@hanssong718 Your English is great! No need to apologize. The reason why I no longer use the vest is because I felt it was too awkward to use personally, and it did not work as well for me. However, that is not to say it does not work the best for everyone. I think for younger children it may be better to use the vest and/or mask. Currently I use “Philips InnoSpire Essence” for my medicine. This is basically a “pipe” you breathe in for your medicine, however, the mask may be preferable for younger children? I also use an Aerobika device which is similar to the vest in that is vibrates your chest. Again I think the vest may be better for kids. It all comes down to preference! In my more recent video I show both devices so feel free to check it out if u want. I hope this answers your question!
I also use the vest, with aerobika and a Acapella. I inhale Albuterol, hypertonic saline, Brovanna, and use tobramycin nebs 28d and then 28 d off. I am also on daily Prednisone and mycophenolate as well as azithromycin and bactrim. I am on oxygen 24/7. I qualify for a lung transplant now and am an example of how this disease can be very severe and life threatening as I have been on life-support many times. I have to go into the hospital multiple times a year for IV antibiotics. All of this is because no one knew what was wrong as a child and I didn't get proper care until my early 20's. My biggest advice is airway clearance, airway clearance, airway clearance. Do whatever you have to do to get it out. Take all your meds even if you don't think that you need them. Make sure you see a pulmonologist and get lung function studies on a regular basis so that if something changes they can adjust your therapy and meds before you have permanent lung damage. Everyone with PCD is different and may need different therapies, but we all have the potential to end up like me. So keep doing whatever works for you and do it as many times a day as you need to or your physicians ask you to do it. And keep active on a regular basis as exercise is natural airway clearance. Stay strong fellow dyskies!
@@devangel3614 I’m so sorry to hear how much you’ve had to go through. The idea of getting a lung transplant is such a scary thing, but I am wishing the best for you!! I hope you have the opportunity and that it all works out smoothly. I also started getting proper treatment at my early 20’s so I am much more thankful now than I was in the past about my scenario. Thank you for your comment and for being so strong. You got this!!
I’m glad I could help! So for my surgery I had both jaws moved. I had my lower jaw pushed back and my upper brought forward a bit. There were 5 cuts made, 2 on each side, as well as an extra cut made on the outside. I hope this helped - also, good luck with your surgery!!
Just to clarify I had my surgery on August 12th, so it's taken awhile for me to upload this video. Fun fact I filmed this at 4 AM so please pardon any mistakes I make.
