Diagnosis and now raising Awareness to help others
i had progressively worsening breathing issues for many years before my diagnosis of rp. I went through many specialists and tests and no one could identify why I was having breathing issues. I had no outward signs of rp until one day my ears swelled up and antibiotics didn't work...I saw a different local doctor who recognised it as RP....I started a short course of prednisolone and the ears calmed down. I read up on the symptoms and they matched ...hoarse voice, breathlessness etc. He referred me to my local rheumatologist who unfortunately denied it could be RP ...it was so rare, I was so young and no ongoing symptoms! My respiratory doctor even said I must be closing my own airway...it was pychological .
In 2011 I developed a flu then a chest infection and I got very poorly...once again steroids helped me and I did some more Research and found a specialist of RP in London, my gp referred me and within a week I was seen and diagnosed! A camera was put down my trachea and it was discovered it was only 3mm wide where it should be around 20mm!
I have been lucky and started treatment immediately and had surgery to widen my trachea. My breathing improved drastically and I have been able to go thus far without needing further surgery. (six years later now! - 2018)
I am now an Administrator of a very active Facebook Page which has over 1,500 members across the globe. It is a very active group who share daily their experiences, knowledge and support to others dealing with Relapsing Polychondritis. We welcome patients already diagnosed, people struggling to get a diagnosis, family members, carers and health professionals wanting to learn more and raise awareness of this illness.
We have also recently launched a patient led website: www.relapsingpolychondritis.org
Our main aims are:
Helping others who may be without support or information about the condition
Giving reassurance to others through our own experience
Raising awareness of RP amongst the medical profession and the general public
Providing a forum for exchanging knowledge and seeking further information
Signposting to helpful resources
Providing a listening ear when needed.
We'd love to hear from you..
Lisa
info@relapsingpolychondritis.org
Find people with Relapsing Polychondritis through the map. Connect with them and share experiences. Join the Relapsing Polychondritis community.