EDS III Corrie Actress Cherylee Houston in The Mirror

[barkingmad]

That is brilliant news. i know someone is making contact with her officially. I think it would be helpful to suggest to the writers that they have a n unique opportunity to get the right message across about HMS/EDS3, including the fact that the majority of people with HMS do not need a wheelchair but are in pain and suffer from fatigue and injuries constantly.

Anyone fancy writing? I will happily endorse it.

[leashy11]

Did anyone see the disappointing episode of Corrie last night? I was on the edge of my seat when Kirk asked Izzy how come she was in a wheelchair and after some joking around the explanation was "it's a degenerative thing" and "it's genetic" and that was it! Not even a brief explanation of the condition or even the name of the condition! I think the writers have just skimmed over it and I was very disappointed!

[Sue New]

Hi Leashy

I think (or more the point I hope) that as the weeks go on the writers will explain more about the condition. I think it is early days yet, and hopefully as her character develops, we will learn more about her condition (fingers crossed).

Sue

[leashy11]

I hope so! If they just leave it at that it's going to be a huge disappointment!

[Eloise]

Might be disappointing - but it is very realistic. How many of us don't bother giving an explaination when people first ask, as we know all the problems that come with it!

[Blaadyblah]

Leashy, I'm with Eloise - sounds like exactly the sort of thing I'd say. If people ask further questions they'll get more - but I don't want to be my disabilities so I only say more than that if pushed, or when I know people better - giver Izzy a chance!

[WinonaLemonade]

i didn't think heds was degenerative? just for some people

[gila]

hmmm the 'degenerative' comment- grrrhhhhh- as afaik speaking in med terms, in and of itself, it is NOT a 'degenerative condition' (like RA or lupus or some types of MS are)- as in it isnt absolutely 'unavoidable'/doesnt happen 'all by itself'/'all the time' that you 'degenrate', for example go from subluxing 1 joint to dislocating that and more joints-

afaiu it's more that 'more than normal wear and tear' and frequent injuries (which are aggravated by bad posture, wrong muscle use, always locking joints in hyperextension, overdoing etc etc) and the lack of understanding of the condition amongst general med bods (and lack of funds for loads more research) = the lack of early diagnosis and intervention/right treatment that causes so many of us to 'degenerate'-

or at least that seems to be the current theory- if the current push to treat bendy kids early on and intensively will really mean that they'll have less probs a s adults - we'll have to see...
but there is a good chance that this can work, as with the right help and loads of effort things can improve even in adults (look at hannah- after over a year of the 'right' daily physio exercises her 'more out than in' shoulders now even stay in when she's pushing herself in the wheelchair!!!)

and there is the same theory around re chronic pain- that if you catch/treat it early it might not become permanent- but whether that applies to chronic pain syndromes???? and where/ what/ if there is a difference between chronic pain and chronic pain syndromes...???????

re "izzy didnt even mention the name"- I thought that was somewhat disappointing... but yep it seems 'realistic'...
but we can change that 'reality' ... if all of us when asked first just 'name it' /say "ehlers danlos/hypermobility syndrome" rather than some explanatory comment of what it does/is... then at least the name will become more generally 'known'
i've been doing this for quite a while now and find the peops that actually arent really interested (and/or are scared of admitting to not know something) just go "oh" or "ah" or... and you're done 'explaining'

I find most peops though go "what's that then?" - "a genetic connective tissue disorder- I have loads of probs with joints, ligaments, tendons, muscles etc, frequent injuries, constant pain, get v easily exhausted and plenty more other stuff going on/wrong" - that seems to be enough explanation for most-and I'm always pleased when peops go "what's it called again?" - as that means to me they might actually remember it
xxg

[leashy11]

Perhaps I am being too impatient, I admit I don't usually discuss HMS with people but then I'm not reading from a script on TV so I think I just hoped they would sow the seeds at that point like they immediately told us why Libby's boyfriend in Eastenders was in a wheelchair. I'll try to be more patient!

[Pickle]

Someone at work told me about this lady, now i've had to start watching Corrie

One thing that concerns me is that when asked the other day why she was in a wheelcahir (after a more 'interesting' and jokey reason was given) she replied that she has a degenerative disease, and EDS III wasn't mentioned.

I didn't think it was degenerative, i thought it's progressive? Now my poor mum's gone and go herself all worked up

[gila]

pickle- oops... show your mum and read my post 2 up/back from yours
the same applies to "progressive"-
xxg

[serenity79]

Heh, I totally used Izzy as an example today, I was at a Fibromyalgia awareness course and we all had to introduce ourselves, say how we got diagnosed and I said that my fibro was secondary to EDS Hypermobility type - cue blank looks, so I pulled out the old 'does anyone watch Corrie?' trick. Turns out they all did, and all knew who Izzy was, so I just said I had the same condition as she had

[lil_miffy]

I think its a good thing that cherylee's character is a wheelchair user with EDS/HMS. I know that the conditio affects people differently but its about time the more seriuos end of how bad it can get is being shown. Maybe now drs will start believe that you can be quite disabled with eds/hms and that it doesnt just mean you are bendy.

I also think the way she explained the condition very breifly to kirk was accurate. How many of us give new people a full on lecture on the condition first tiem round?

Iv written about cherylee and the eds/hms story in corrie in my hms blog here :

http://livingbendy.blogspot.com/2010/06/coronation-street-gets-bendy.html

[serenity79]

That was excellent

[niccysearle]

Well I missed the introduction of Izzy's character to Coronation Street, so had no idea that she had the same disability as me!!
It is so true what people have said on here about how she explained what was wrong with her, as I find I tend to gloss over it when people ask me.....I normally just say that I have problems with my ligaments, particularly in my ankles. It is silly really that I try to gloss over my problems when really I should just be honest with people about how crappy life can be for us with HMS, but to be honest half the time I don't have the emotional energy to explain it properly.
Having said that, I do agree that if we all talked about it more and people had more awareness of it, it would probably be of great benefit to us!! So maybe I will just have to stop glossing over it!!