Patient Stories: Carolanne - UARS Diagnosis
My household and sleep weren’t the average picture as I had 2 little ones with complex health needs including Sleep Apnoea. It was when our son, Travis, arrived in 2009 that we first heard of the condition, OSA (Obstructive Sleep Apnoea), as he was born with an airway defect. My husband had always been a snorer - in fact we have many family stories that involved his sleep noises! Incidentally, hubby was finally diagnosed with OSA, after having to convince our GP as he was at the time overweight so it was thought that if he lost the weight he would lose the snore. No such luck!!! Fast forward...... the sleep study he did eventually have confirmed OSA and he came home with CPAP. Our eldest teenage son was also diagnosed a few years later, so it's not hard to see why I get annoyed when I hear even some medics state that Sleep Apnoea doesn't run in families, when it clearly does!
Taking into account the above, you can see how I thought it was my husband's DNA that had contributed to the children having floppy airways - I never 'dreamed' I was in the equation! However, I've known Kath Hope (of Hope2Sleep) for a number of years due to my family's various diagnoses, so she knew of my own struggles and also that I suffer from EDS (Ehler's Danlos Syndrome) which also has links with sleep disordered breathing. Therefore, Kath had, on lots of occasions, suggested I get tested, and I admit I found this hilarious..... I mean imagine.... me as well as the others being affected by this! Anyway, I eventually kept my promise to Kath (as I am one to keep my word) and lo and behold discovered I suffer from UARS (Upper Airways Resistance Syndrome). I hasten to add that I'm with a sleep clinic, thankfully, that is willing to treat UARS, so I too began CPAP therapy and it changed my life quality!
Before I went on CPAP I could easily sleep for 16 hours, when circumstances allowed, yet I was still always tired. I would never hear an alarm clock and needed to be woken numerous times. Mornings would mean it was 2 hours before I felt even remotely normal - almost like a hangover without the alcohol. I am very slim and always have been. I did snore, but not loudly, and I would toss and turn and waken myself up throughout the night, which is now a thing of the past. I remember the first morning I was due an early shift morning shift and I actually managed to waken myself with an alarm at 5am! That for me was all the proof I needed that wearing a mask each night to bed, although not the average bedroom accessory, for me is gold and truly worth the sacrifice!
Carolanne Murphy - Trustee of Hope2Sleep Charity