Living with PCD as a 12 year old girl. By U3

Hi,

This is U3. I am a 12 year old girl and I have a rare genetic disorder called Primary Ciliary Dyskinesia. PCD for short

Primary means I was born with it.

Culiary means that it concerns the cilia.

Dyskinesia means ‘unable to move properly’.

This means that my cilia don’t work as they should. They are not doing the ‘Mexican wave’. They are not flicking the excess secretions out of my lungs. This means that they aren’t getting rid of the germs and harmful bacteria in my lungs.

I always had a wet cough and a runny nose as a child, even as a baby. It was annoying. My parents couldn’t figure it out. My mother was always worried and even took me to a doctor to get it checked, but he thought I was fine and just gave me a nasal steroid spray to ease the runny nose. My mother doesn’t like steroids. She didn’t let me use it.

I got diagnosed when I was about 8 years old. This is when my baby brother, U5, was born. He had strange symptoms that my parents were concerned about. A runny nose. A wet cough. Sniffles. And very fast breathing. My mom says that she would not have thought anything was wrong if she didn’t already have 4 kids. She knew something was wrong.

The midwife referred him to hospital when the baby was 2 days old. And that’s where the drama started.

The first thing they did at the hospital was to check U5’s oxygen. The nurse joked that the oxygen machine was broken because the reading was low. 85%. She brought another. 85%. And another. 85%. That’s when she started panicking.

She quickly called the doctor, who straight away put the baby on an oxygen mask and ordered an x Ray. The x Ray showed that the baby’s heart was on the right! Situs Inversus. Or – situs opposito, as my sister likes to call it :).

This was the first sign that my parents had that this baby was different. My mother Googled like crazy.

And then she finally knew what was ‘wrong’ with me. PCD.

Anyway, the rest of the story is for another day.

Living with PCD is tiring. I have to do chest physio twice a day. I need to take antibiotics. Sometimes, I just don’t want to do my physio.

My personal physiotherapist, Rajinder Kang, is really helpful. She explains stuff, and even wrote a short story book for kids with PCD.

I would like this blog to be a kind of online diary. (And my mother is making me do this …) I want to meet other kids with PCD. I feel ‘different’ sometimes, because I can’t do things that my siblings are doing.

That’s all for today. I’ll write again soon!

U3

http://pcdsupport.org.uk

This website has lots of information and advice.

 

https://www.justgiving.com/fundraising/3sisters2brothers

 

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