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PCD Family Support Group (UK)
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Living with PCD

Hi, My Names Gwen and I'm 16 years old. And 6 years ago I was diagnosed with Secondary Ciliary Dyskinesia.

My whole childhood I couldn't do what other kids could. I was constantly sick, I switched inhalers, and started taking allergy medication at a young age. I felt different from other kids and even left out when I couldn't play tag or even run around on the playground. Doctors and even school nurses just called me over dramatic because of most of my symptoms. When I went to a ENT he suggested seeing a Pulmonologist and described my symptoms. By 6th grade I had my first Bronchoscopy and was later that month diagnosed with SCD.

I later went on to have 3 bronchoscopy's, 2 sinus surgeries, a tonsillectomy, and adenoid removal. My freshman year of high school I had the smallest wheeze in my lungs, which was not uncommon for me. I then spiked a fever of 104.6 and its continued grow. I was taken to the hospital and put on leviquinn for the first time. It worked but I was scared for my life the whole time. I struggled to breath and barely got any sleep while in the hospital.

Each time i miss school due to my illness I have to make up the classes...... even after my surgeries. and exercising is hard enough as is. I have a 504 plan at school, but it does little to nothing for me due to my schools incompetence.

During my last surgery my doctor diagnosed me with Primary Ciliary Dyskinesia. It didn't really effect me at first until I realized I have to live with this my whole life. Due to me missing school no one really takes me seriously and looks down on me. I love to sing, dance, and act. but its hard to do when I get sick. I use a smart-vest everyday and even double up on it when I'm sick. I don't think anyone gets how different I feel. I know it sounds silly but I'm not normal and I never will be.

I just need to start being okay with that. So thank yo for having places like this where I can share my story and grow more as a person.

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Hi Gwen. I am sorry to hear that you are having a tough time. I'm a Mum to two boys with PCD - they too missed lots of school when they were your age. They are now 20 and 22 and they are both at college. They still do physiotherapy twice a day (here in UK we don't use the vest they do something called ACBT - google it to learn how to do it... you can do anywhere when you feel the need to clear your chest and do regular nasal rinsing.) and of course take inhalers and other meds (including taking antibiotics when needed) but are both doing really well. They are determined that being different because of PCD isn't going to let them stop achieving their dreams. Our youngest son is at Drama School...he too wants to be an actor. It is hard work but he has managed so far to stay well in his first term.

We have always tried to get our boys to learn as much about PCD as they can (have a look at some of the videos on our website pcdsupport.org.uk) and try to make the most of the time when they are feeling really well.

Good luck and happy Christmas

Fiona

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Hi, Gwen. Sorry to hear you feel.so different, because guess what? We ALL are different, you may not see that on your sixteens, but we really are, coping with our own problems, insecurities, illness and thoughts, allways trying to do our best and often feeling we dont fit in...I feel that your diagnosys is a good new, you've been so many years suffering and not knowing exactly what was going on with your own body, its scaring and debilitating...now you have the opportunty of getting to know the PCD, you can research, you can study, you can take control of your health and start feeling better phisically, and when you do, your mood will change too.

For me, the first thing you need is a consistent respiratory physio program. Talk to your doctor and find a good physio who can make a routine for you, just the vest is not enough, you need exercises that improve your lung performance. Also you could ask your doctor if hypertonic nebulizations would help you, they have helped my son so much!

I encourage you to be brave and get to know and manage your illness, there are new treatmemts developed every day, things are going to be ok. It wont be easy, but nothing is. You will

have PCD but it wont have you!

Sorry for my english, I am from Spain.

Good luck.

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Hi Gwen

I use to feel different then other people growing up as if I didn't belong but I realized as I got older that having PCD is apart of me. I keep telling myself that I don't know any better and that doing chest physio therapy and nasal rinses everyday were normal to me. I soon came to realize that it is okay being different because having PCD is me and I like me.

I did get a lot of strange responses (good and bad) from people when I spoke about my syndrome. Telling other people is a soar issue for me as I have come across ignorance and judgement.

There will be hard days but look forward to the goods days.

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Hi Gwen,

I understand what you are going through! I too have PCD. I am much older than you but was diagnosed with PCD at 15. I know what it is like being a teenage girl and feeling like you can’t keep up with others and how isolating having a chronic illness is. I understand feeling overwhelmed by knowing you will face this condition for the rest of your life.

I hear all the time that I don’t look sick. This kind of comment makes me worry that people think I’m faking it when I’m sick which is often. I still get embarrassed when I cough and sound like a old guy who has smoked his entire life. It doesn’t make you feel very feminine!

Things that have helped me: 1. Having a positive attitude. It takes work. Some days are easier than others. Howver, I know I can choose to worry about what I can’t do or can’t control or choose to focus on what I can. 2. Focusing on what I am thankful for. I bet there are things in your life that make you lucky!! Often I think that I’m grateful for the compassion for others that I probably wouldn’t have if I weren’t dealing with PCD. 3. Find a therapist who specializes in helping people with chronic illnesses. It’s great to have an objective person to talk to about issues related to your PCD. 4. Read books like “Thirteen Things Mentally Strong People Don’t Do” and “The Gifts of Imperfection” 5. Continue to reach out to others on forums like this.

Feel free to reach out if you would like to correspond some more!

Regards,

Beth

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Hi Gwen! I'm 19 and in college and I can relate to a lot of things you said!

I have had PCD since I was a baby and all throughout childhood I was getting pneumonia. I have been going to a pulmonologist since I was a kid as well. I also have been playing sports all my life, but eventually had to quit everything in highschool because they required you to run a mile to be on the team and I couldn't do that.

I have always been a great athlete, and both of my parents are college athletes, so naturally it was something I was very good at, so it killed me when I couldn't match up to the other kids. I remember when playing basketball, I would start of very strong and by half time, I wouldn't be doing anything because I was so wiped out from running back and forth and my coach and teammates would get very confused and upset with me.

Anyway, yes I have been hospitalized many times and have had about 4 Bronchoscopies/nasal surgery!! I have also had many sets of tubes in my ears, many catscans, way too many x-rays, and my adenoid removal when I was a baby

I can't tell you how many times I have been put on leviquinn and prednisone. I take them both super lightly when they are intense steroids and antibiotic. I can diagnose myself with pneumonia days before it gets bad or recognizable by doctors

I was also on the 504 plan in highschool! And I agree, it was difficult because not all the teachers were helpful to me. I also always felt very differently in class and was afraid to cough in class because I thought people would always wonder why I was always "sick", which they did

It took me until my junior year of highschool to tell my friends that I didn't just have asthma and was always embarrassed/ashamed of myself

I also have a chest physiotherapy machine and a nebulizer that I have to use every day, and I was very nervous at first to do this in front of my college roommates, but they did not care and I have some very good friends at college:)

I definitely agree with feeling different because I don't think people always understand the severity of our condition. Not only does it affect me physically, but I get very anxious about and often I don't want people to know because I want to be "normal"

I don't even think my closest friends know how serious it can be

I am still trying to be ok with what I have and with the everlasting stigma of feeling out of place and different from everyone. Especially, when it holds us back from so much.

Let me know if you want to talk more! I can also tell you more about how I deal with my PCD in college!

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Hi Gwen - I hope you have felt encouraged by all the replies above. Your post reminded me of exactly how I felt at your age living with the condition and having to deal with it’s physical limitations embarrassing aspects and the unkind comments of others. As I’ve got older (I’m now in my 40’s) the physical symptoms are still there and have worsened but I feel I’m stronger mentally and emotionally to deal with it all. The unkind people who say “you look well so can’t be that sick”, are the ones who have the problem, not me or you. It wasn’t until my late 30s that I found the wonderful UK PCD Support Group ( see the website that Fiona mentioned) and I took so much comfort from reading about other people’s stories and learning about how I can better manage PCD. I have since been able to meet up with other patients and families living with PCD through the wonderful network that exists via the website and I’m learning about my condition all the time which has helped me to feel that I’m in control of PCD rather than it controlling me. Without a doubt the hardest part for me to comply with has been is the chest clearance. Even in private I found it so embarrassing to have to listen to myself making vulgar noises and bringing up digusting mucus. I realised I was hating myself for having to do it so would do anything to avoid it. Once I realised that it was because what “I” thought of me and not what “others” thought of me that stopped me from doing chest clearance I was able to have different conversations with myself to make myself better at doing it. I’ve learnt that not many health professionals don’t understand or know about the condition through no fault of their own, so I’ve had to take control when I go to GP appointments and ask for specific things....antibiotics, referrals for chest X-rays, blood tests, physio support, airway clearance devices.. the list goes on. In my experience if you don’t ask you don’t get! And if you don’t get it the first time you go back and ask a second and a third until you do. And if that person still doesn’t listen then you leave them and find someone else who does. I was delighted to hear you say “I just need to start to being ok with that” as it’s that wonderful personal insight that it going to get you through the bad times of this condition. Keep saying it when you can - stay strong!! Sending you much love...

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Sad but true about the lack of support and understanding for living with PCD. I have come to accept the lack of support, acknowledgment from others and little empathy at times. I know that I am strong and hope you are strong and brave too. As for me I am brave but no one will see it but me. So I am going to keep helping myself to keep heathly because my reward are the good day of being able breathe.

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