EDS and asthma

I really need to register at PubMed so that I can read some of the articles and journal entries because there is a fair bit of interesting research being done on the various forms of EDS. This one had me particularly interested:

Asthma and airways collapse in two heritable disorders of connective tissue.

From the abstract, it appears that people with EDS III and HMS have a much higher incidence of respiratory disorders such as asthma. No big surprise to me – I think that even the NHS leaflet now says something along those lines.

The interesting bit (and the reason that I want to read the full article) is the hint that EDS-ers also have a higher than normal lung volume despite the resipiratory issues. And reduced exercise tolerance.

My peak flow results (when my asthma is OK) always boggles my doctors because it’s so high. Nearly double my mother’s, in fact. This also makes it hard for them to grasp the severity of an attack because I’ll be choking and struggling to breathe with peak flow results that aren’t as low as many asthma patients at that stage. The ER doc who saw me in my big, scary attack a few years ago only started to get concerned and reach for the steroids and nebuliser when mum told him (I couldn’t talk anymore) what my ‘normal’ results are. Two nebulisers and a big dose of prednisone later…

I was only just starting to get back to what my mother’s ‘normal’ peak flow is. Heh.

More than half my attacks have been triggered by exercise. The rest happened when I had viral illnesses and when my breathing gets bad, I know that I’m probably coming down with something. Unless there has been a trastic weather change, which is my other trigger.

It’s always been difficult to track some of this because my asthma (and my mum’s) behaves quite differently from my sister’s and my paternal cousins’. They had asthma as children, grew out of it in their teens and had environmental triggers in addition to the traditional viral stuff. I grew into mine as a teenager, have no environmental triggers (apart from barometric pressure) and used to need to take my inhalers before I did any exercise. Now I just try to avoid the forms of exercise that my lungs dislike 🙂 My mum’s history is similar.

If my high lung volume is related to the EDS then my asthma and its odd behaviour would finally make sense – I really want to read that article. And also the one on hand and wrist involvement with EDS. And the one discussing whether EDS-ers must always have X-rays to disagnose dislocations (hello radiation poisoning). And maybe the one discusing obstetric complications for Hypermobile EDS.  But mostly this asthma one so that if I have another hospitalising attack  I can explain to the ER doc why my peak flow is so high and they can be aware of it the next time they see another patient like me. Or at least, I’ll explain when I can breathe enough to actually talk to someone.

Sometimes I wonder whether EDS-ers should have medic-alert bracelets, then I decide that we have so many potential oddities that it would take the ER docs longer to read the info than to treat us.

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