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

[Katieamynewbs-95]

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

[janet1561]

Hi I know this is 2 years old but I too was born with KS but was 32 before they found out and I am now 58, they found out only because of the numerous chest infections i kept getting.

I was told that because of regular infections my body is constantly fighting infection which causes fatigue but also he said i have M.E which makes sense, I try to manage it by eating healthy and taking herbal remedies such as holy basil, tumeric, allicin, vitamin d3, vitamin c and the other usual ones but if I overdo things I'm usually fatigued 2 days later. It's like being a cheap battery loads of energy then it suddenly goes so it pin pointing when the fatigue starts and seeing if there is something that triggered it off hope this helps