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Topic: Ehlers Danlos on the Beeb  (Read 236 times)

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Ehlers Danlos on the Beeb
« on: November 12, 2020, 11:18:38 AM »
@Margo, you must have heard about this


But did you also hear the radio investigation show on BBC 4 about kids in institutions being treated badly?  One of those kids had ED and I thought about you


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Re: Ehlers Danlos on the Beeb
« Reply #1 on: November 12, 2020, 11:32:04 AM »


@Margo, you must have heard about this


But did you also hear the radio investigation show on BBC 4 about kids in institutions being treated badly?  One of those kids had ED and I thought about you

Yeah, there is a huge amount of discussion around parents being accused of FII/munchausen's by proxy when kids have EDS. Because the NHS now loves the "medically unexplained symptoms" diagnosis, most "new" people with EDS have to jump through hoops for years because nothing shows up in standard blood work and scans rarely reveal the extent of soft tissue damage.

I'm glad more people are talking about it! I wish it meant more research funding though, there's been a huge push to find the genes but so very little into the actual damage caused by the condition to develop treatment options. I will say that so far medical cannabis has been a godsend. I couldn't tolerate one of the meds I was prescribed so I turned it into a topical balm yesterday, and it is the first time I've had a break from foot pain in months. A low dose has me able to eat more food than literally every med available on the NHS did with almost no side effects. I know based on existing research when you get into higher doses it can have the opposite effect so I am approaching it with cautious optimism that it can help the systemic pain and keep helping me eat, but I would take being able to eat over everything!


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Re: Ehlers Danlos on the Beeb
« Reply #2 on: November 12, 2020, 05:17:34 PM »
Food is good! Glad you are getting some relief.

There isn't a lot for people who suffer from anything exotic on the NHS, it seems.  I guess that's the downside of an under-funded national system: they have to do the most they can for the largest number of people, so individuals with sometimes expensive and highly-specialized needs might get lost in the shuffle. From what we experienced, there's not a lot of organizational will to go the extra mile for investigational studies and sometimes experimental treatments when it's not going to benefit a justifiable number of people.


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Re: Ehlers Danlos on the Beeb
« Reply #3 on: November 12, 2020, 06:07:06 PM »
Really glad to hear things are improving from a medical point of view.
The silver lining to the covid cloud is that remote working gets more common all the time, so maybe things will improve professionally as well.


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Re: Ehlers Danlos on the Beeb
« Reply #4 on: November 12, 2020, 06:25:20 PM »
Very glad to hear you've found some relief Margo.

I know we've had a few members with diagnosed EDS in the USA, so it certainly may not have been you.  But I remember someone was really excited at moving the UK as the NHS had specialists for EDS unlike where they were in the USA.  Are you finding the opposite to be true here?

I'm glad the BBC did an awareness piece.

Jimbo, I'm starting to see salaries go up finally (starting to get close to pre-covid levels in my field).  I even have an interview tomorrow that I accepted on a whim!   ;)


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Re: Ehlers Danlos on the Beeb
« Reply #5 on: November 12, 2020, 06:34:26 PM »
Very glad to hear you've found some relief Margo.

I know we've had a few members with diagnosed EDS in the USA, so it certainly may not have been you.  But I remember someone was really excited at moving the UK as the NHS had specialists for EDS unlike where they were in the USA.  Are you finding the opposite to be true here?

I'm glad the BBC did an awareness piece.

Jimbo, I'm starting to see salaries go up finally (starting to get close to pre-covid levels in my field).  I even have an interview tomorrow that I accepted on a whim!   ;)
  Oooooh, good luck on that.  We all deserve to earn more than a pittance. 
For me, the contract market is dead.  There's nothing now, and then there will be a break for Christmas.   
I'm biding my time until the market improves, then I am going to drop the hammer on the current employer. 
I am sooo bitter about having my income cut significantly. 


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Re: Ehlers Danlos on the Beeb
« Reply #6 on: November 12, 2020, 06:44:34 PM »
  Oooooh, good luck on that.  We all deserve to earn more than a pittance. 
For me, the contract market is dead.  There's nothing now, and then there will be a break for Christmas.   
I'm biding my time until the market improves, then I am going to drop the hammer on the current employer. 
I am sooo bitter about having my income cut significantly. 

Tomorrow’s interview is a company I’ve wanted an interview with for the last 5 years.  They have NEVER interviewed me.  I think because I don’t have UK “qualifications” I couldn’t get past the software.  So considering I’ve finally been offered an interview, I’m going to give it a go. If nothing else, hopefully it’ll get me properly in their system!


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Re: Ehlers Danlos on the Beeb
« Reply #7 on: November 12, 2020, 07:02:48 PM »
Very glad to hear you've found some relief Margo.

I know we've had a few members with diagnosed EDS in the USA, so it certainly may not have been you.  But I remember someone was really excited at moving the UK as the NHS had specialists for EDS unlike where they were in the USA.  Are you finding the opposite to be true here?

I'm glad the BBC did an awareness piece.

Jimbo, I'm starting to see salaries go up finally (starting to get close to pre-covid levels in my field).  I even have an interview tomorrow that I accepted on a whim!   ;)
So, there are specialists for some things, but not all, related to EDS. They are scattered about the country (each doing a tiny bit of the puzzle), most are in London, and trying to get referrals on the NHS to them takes an enormous amount of effort and time. I've simply been told there is no local care for me and they will not refer me, so I have some complaints to file if I ever have the energy. I have been injured by enough people not versed in EDS that waiting longer isn't a problem for me usually. But FPH is the worst hospital and the doctors there are so full of themselves they think they know everything, so when I said "you're referring me to a London specialist, please can it be at this hospital (with the EDS versed rheum)" I was told no, they have a CTD clinic at this other one so it will be good enough for you. Too bad that's a lupus clinic so no, it wasn't good, and I have no local care during a pandemic. So now I have to find a job and go private first and then get moved to their NHS books. There used to be a fair amount of EDS research here, but that seems to have changed too unfortunately.


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