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rare disease patient survey

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rare disease patient survey

Post by lozza on Tue Sep 22, 2015 5:57 pm

Dear all,
Rare diseases uk are doing a survey into patients with rare disease, i have filled out with my experiences of primary hyperparathyroid . Thoughts other would like to know about it as well.( no haven't had treatment yet, still waiting )


hopefully the results of this will help patients with not only our disease but other rare diseases, results to hospital consultants etc.


https://www.surveymonkey.com/r/rduksurvey 
@rarediseaseuk

hope link works or look at rare disease uk.

best wishes

Lozza

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Re: rare disease patient survey

Post by Admin on Tue Sep 22, 2015 8:07 pm

Thanks Lozza

I wonder what their definition of a rare disease is?

I'm not sure that Hyperparathyroidism would be considered rare.
Getting the right treatment is rare ;-)

Edwin
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Re: rare disease patient survey

Post by lozza on Tue Sep 22, 2015 9:31 pm

Yes hyperparathyroid is classed as a rare disease as well as other endocrine conditions.


i did the survey myself as i wanted my experience of struggling to get treatment to be on record.
 It ask about what support you have had, did you attend a centre of excellence and how the disease has affected your life. It is not often i am asked about my experience of hyperparathyrodism.

 There are around 6000- 8000 different rare diseases, i didn't realise there were so many conditions out there.

best wishes

Lozza

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Re: rare disease patient survey

Post by Tigerlily on Thu Sep 24, 2015 9:01 am

Lozza - how great to see you here again! I was only thinking of you yesterday and wondering how you were doing.

The reason you came to mind was in connection with an article I read yesterday that stated that Addenbrookes has been put into special measures. Apparently "Bosses apologised for failings in care, including long waits and cancelled appointments" - I remember you telling me about this in the Endo Clinic..

The CEO stood down earlier this week just before the report was made public saying it was unfair to call the place inadequate - he obvs knew all about it! The acting CEO is one David Wherrett and I am thinking of writing to him to outline the lapses in care that I have received at Addenbrookes.

I eventually had 3 hyperplastic PTH glands removed by Fausto Palazzo at the Hammersmith and am feeling 200% better as a result. I currently have a few other issues, but I think they are unrelated to the PTH situation.

I did eventually get to meet your Dr Simpson. She was just as you had described her to me. She also told me that patients in the PTH clinic are offered an annual Ca and PTH blood test (what? just once a year? ye gods!) and she doesn't care if the PTH is 9, 12 or 15, as long as the calcium is within the normal range.

I couldn't believe she told me that. Consistently high PTH is recognised as a risk factor for heart disease.

Enough of me, where are you at yourself with all of this? Have you had an ultrasound yet? Are you still struggling? Do let us know how you are doing - and yes, I will do the PTH survey.

Love from Tigerlily xx

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Re: rare disease patient survey

Post by Tigerlily on Thu Sep 24, 2015 10:28 am

Hi Lozza and Everyone

I have just filled in the survey. I have been waiting ages for something like this to come along so as to be able to express my views about the way my case of pHPT was handled at the two hospitals who were unable to diagnose it. I didn't want to make a formal complaint as I am still being seen at both of them.

I know other forum members may have had more positive experiences - I do hope so! - and they could be recorded on this survey as well. It's a great tool for us to have our voices heard - bouquets as well as brickbats (in my case!).

Thanks so much for highlighting its existence, Lozza - and do let us know how things are going for you. Forum members might have suggestions they could make for more helpt for you in your area.

Love from Tigerlily xx

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