Help with rare condition

[modace]

HiI was born with Dextrocardia situs invirtus totalis and have Kartagener syndrome , Primary Ciliary dyskinesia.

Three months ago I had a really bad lung infection which developed into Bronchiectasis. All the specialists and hospital staff including my local GP have been extremely helpful.

But I have suffered with severe lower back pain and lost slight function of my one of my legs.

Is there any out there with the same condition as myself. Your help would be much appreciated.

[Izb1]

Sorry I can help with your query, I have never heard of these conditions that you have but hope that somebody on here can help. You could phone the helpline they may have some answers 0300 222 5800 x

[Ergendl]

Hi, modace, and welcome to our friendly group.

I can't reply from experience, but here are two webpages about your conditions; rarediseases.org/rare-disea... and cuh.nhs.uk/patient-informat...

I seem to remember another member of HU posting about their heart being in the wrong position, but don't recall them using these terms.

Hoping you find the answers and the support you're looking for.

[Alberta56]

Welcome to the forum. I don't think Bronchiectasis normally causes back or leg pains, except by immobilising the person suffering from it. I would consult your medical team and ask them if very gentle exercise would help.

[Patk1]

Welcome to the forum.my nephews son was born with his heart on opposite side.hes only 4 but up to press, fit + healthy.I hope umeet someone insimilar position.is Yr dr Aware of yr lower back + leg problems? X

[modace in reply to Patk1]

Thank you it's hard when you have rare conditions.

[Patk1 in reply to modace]

It is.i hope Yr able to find someone with similar problems to yrself. I and a few members have bronchiectasis x

[PaulineHM]

Hi, sorry to read of your difficulties.

My son was born with CHD and has PH now.

Just wondering if you are aware of the Somerville Foundation for people with CHD. They are very supportive. Perhaps someone there can offer you answered about living with Bronchiectasis and CHD ?

sfhearts.org.uk/

Hoping that you get the answers you need soon.

Go well

Pauline