PCD - Do you also feel unusual fatigue and have arthritis symptoms?

Hello!!!

My name is Silvia and I am writing on behalf of my sister who has born with Kartagener syndrome often associated to Primary Ciliary Dyskinesia.

My sister is now 37 and in the last 5 years doctors have discovered a gene mutation and she has became more vulnerable to getting sick. She has also discovered new symptoms similar to arthritis, stomach pain (maybe celiac disease?) and unusual fatigue (maybe lack of vitamin D?) which we are now investigating as no one seems to find any cause. I would like to get in touch with someone who is experiencing the same symptoms as we cannot find any cause/cure to this at the moment. Please feel free to contact me as I would like to share this with you. A big hug to all, Silvia

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  • Hi, I'm only 22 but having kartageners all my life I have also suffered very badly from fatigue, the doctor recently told me I have a 'slight' vitamin D deficiency but not alarming so not sure if this is the main cause. I also get arthritis symptoms mostly in my wrists if I've had a long week at work so I tend to wear wrist supports when I can.

    I have been trying to find answers to my extreme fatigue problems for years and no amount of blood tests are giving the doctor any answers. If you manage to find anything out I would love to hear about it!

    Hope you get the treatment you need :)

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