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Sallie Powell article

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Kathi209
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Post by NancyMi Fri Oct 03, 2014 1:14 am


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Post by Jasmine2 Fri Oct 03, 2014 12:12 pm

I read this too on the Mail Online, thanks for posting it Nancy. It is very inspirational and describes perfectly what we have to go through and the difficulties we face. I read it out to Mr Jasmine - got choked with tears half way through as it was like reliving my own process - and he said I could replace my name with Sallie's and it would be telling my story too, except for the fact that Sallie's surgery gave her a cure whereas, two surgeries down the line, my pHPT is still persisting and I don't know if I'll ever be cured.

Brilliant bit of awareness raising for us, thanks again for posting Nancy.

Jasmine x
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Post by Kathi209 Fri Oct 03, 2014 8:10 pm

Seen it on FB. Sally is awesome, and as one poster said " apparently she can fly to" [super hero.] That cracked me up.

   Kathi

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Post by Little Audrey Sat Oct 04, 2014 12:23 am

Great article! And, yes, it could be so many of us! I wonder how many people actually get diagnosed by a doctor before they diagnose themselves. Probably not many. In my case, it was an elevated PTH of 112 that caused me to go home and start googling. I knew immediately I had pHPT. I sat here crying when I learned this. Three years later, I finally convinced a doctor that I had this stupid disease! I still don't understand why it is so hard for doctors to figure out!!! If you have a brain, and you can read, you can learn about this instantly!

It is good that Sallie got this out there for the rest of the world to see and hopefully learn!

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Post by Meggy Sat Oct 04, 2014 12:59 am

What's up with the Daily Mail describing it as a "bizarre" condition? Relatively rare, yes but bizarre, really?

I'm afraid I missed the point somewhat and focused on the fact that I might not be fat and could put it down to bloating - although in my case I think fat is more accurate:-(

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Post by Little Audrey Sat Oct 04, 2014 1:05 am

I was thinking the same thing, Meggy. Bizarre is a rather bizarre choice of word there. Laughing

I am terribly bloated, but my problem is my adrenal glands, I think. Don't get me wrong, I have some extra fat I need to shed too, but right now I am still a little blow fish from the water.

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Post by Brigitte0 Sat Oct 04, 2014 8:39 am

I'm pleased the article is out there, especially in this country but I do think it was somewhat sensationalised, but I suppose that is what is expected from articles in the Daily Mail! 

I must say my bloated stomach has deflated since surgery Meggy! Or maybe it was all the hospital food that shrank it down! I thought mine was because I was drinking so much water at one point. Anyway, surgery shrank it, so there's hope for all! 

Love and hugs 

Brigitte xxxx
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Post by Jasmine2 Sat Oct 04, 2014 9:23 am

Yes, I agree it was a tad sensationalised but that's the Daily Mail for you! I have been following Sallie's story on Facebook and she and a couple of other Brits on there are campaigning hard, and lobbying the Department of Health, NICE, BAETS and the media to raise awareness of the woeful diagnostic process for pHPT here in the UK, and get the guidelines changed to reflect best practice, so hats off to them. Bizarre was an odd choice of word to describe pHPT I agree, but I think it's because this disease seems to affect just about all the body's processes maybe .....?

Jasmine x

PS yes, I hung my hat on the bloated belly thing as well ......  Laughing
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Post by Brigitte0 Sat Oct 04, 2014 10:00 am

Bizarre just screams Daily Mail really  Shocked

Sallie's a star and is getting pHPT talked about. My daughter told me that Sallie's article brought about a lot of conversation at Uni and she was able to be quite passionate about the subject when discussing it with friends! If it's a talking point, word spreads and all notoriety is good in the long run Smile 

Love and hugs 

Brigitte xxxx
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Post by NancyMi Sun Oct 05, 2014 2:51 am

Jasmine,
      I was wondering about the bloating that she had.  I think PTH disease causes triglyeride problems so I am wondering if that caused some fat buildup in the stomach area.  Also, I wonder if she has ever been tested for celiac.  I think so many with PTH disease also may have celiac. 
      I hope and believe that  one day soon you'll be telling us that someone has found the culprit that has been causing your pth disease.  
      Your strength is inspiring to us.  I think we all know too that there are days for all of us when we  just don't feel like trying to contend with this blasted condition.  That's ok too.
We're behind you Jasmine.   I love you

Nancy

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Post by Jasmine2 Sun Oct 05, 2014 3:43 pm

Aww thank you, Nancy. That's really kind of you to say, especially after all that you've been through yourself.  How are things with you these days?

Jasmine x
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Post by Little Audrey Mon Oct 06, 2014 1:49 am

My stomach was very bloated over the past couple of years.  I thought I was just getting fat, which didn't make any sense, because I wasn't eating any differently, and I continued to work out even through my pain.   I wasn't able to do quite as much, but I was not eating very much either!      It would appear now that my bloat was from water.    As soon as I started this new diuretic, my stomach shrank an awful lot!    It had gotten so bloated, the skin had become very taut.    It felt like I was about to actually get stretch marks from it stretching so badly!    It really hurt!

Audrey


Last edited by Little Audrey on Mon Oct 06, 2014 10:40 am; edited 1 time in total

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Post by Jasmine2 Mon Oct 06, 2014 7:54 am

Audrey, not sure if I'm on the right track here but do adrenal issues also cause weight gain around the abdomen? Not sure which way round it is though, whether it is with Cushings or Addison's?

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Post by Little Audrey Mon Oct 06, 2014 10:39 am

Well, I know too much cortisol can cause weight gain around the middle. Not sure if too little cortisol can cause the same. I know people with Addison's do complain of quite a bit of weight gain from their steroid medications.

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