Why did you join PAS?

[pvanderaa]

I've noticed that not all new members make entries on the forum. I think that this is perfectly within their rights. I'm just curious as to what percentages exist. More than one option may apply so choose the one that best describes you.

[JDee]

I have 2 parents with PA so answered 'I support a person with PA".

[Silvergirl]

[deeedney]

I joined because once I was finally correctly diagnosed, I did a load of online research to find out more about this condition and found the website. It was a relief to find others with the same condition who understand just what it is like and to have their support. It makes a huge difference to know you are not alone...not that it is a good thing to find out just how many sufferers there are.

The info I have gained since joining has enabled me to approach my GP with an informed arguement for increasing my treatment, which is now under review. Fingers crossed................

[BeeNumber12]

Hi Deeedney and welcome!


Glad you found some useful information after joining. Good luck with the doctor -hope you are able to obtain what you require. Let us know how you do.
Dorothy

[JDee]

Hi Deeedney and welcome

Glad to see you have spent some time getting to know about your 'condition'. Let's hope you get a good response to your request.

When you have a minute (or so) please start a 'My Story' so we can all get to know you better.

Good luck
Jac

[Luna1]

I am probably one of the unusual ones whereby my Dr diagnosed me around 3 months into investigations and the day that he told me that I had PA and would need treatment for life he did a print off that actually had this forums web address at the end of the sheet.

After he said that I am the youngest patient he has with such 'very low levels' he didn't really go up in my estimation as when I saw him next time and told him about this society he was unware of it's existance despite it being on the info sheet

Joanne

[Australia]

I'm trying to find out about the effects of untreated PA during pregnancy on a foetus. I have 2 children, and had untreated PA during both pregnancies.

So glad I joined, I'm thrilled to find so much information on PA - and so many nice people!

[JudithML]

I haven't answered this because I think there is an error in question 1. The problem is the adjective "hereditary". I have been diagnosed with PA, but I don't know whether it is hereditary. Neither of my parents had it, and I have no children so I cannot say.

I suggest that "hereditary" is misleading and should be erased.

[Caz]

I have PA, but it isn't hereditary. There isn't an option for that.

[pvanderaa]

[KateMelissa]

I Knew I had PA years before I was diagnosed and joined the society to make sure I had all the information I could get hold of as I was desperate and the doctors would not listen to me. I have an unusual form of the condition (unfortunately) and have never found anybody with exactly the same problems as me, (however I have read about one case on the internet) and except for the medical profession continuing to see me as an 'interesting case' they really are not interested in helping me cope with any of my symptoms. I have learned far more from this site as suddenly lots of people have the same (or similar) symptoms as me and I no longer feel 'a freak of nature'. I am so grateful-thank you.

[KateMelissa]

Hi Andrea,
I did start my story many years ago on this site (I know my members page says I have only been a member since 2012 however I did join in approx 2008-there was a mix up in 2012 with my membership so I had to join again).
My story is so long-winded and confusing (and according to my consultant-rare) that I haven't got it in me to re-live it all. I have managed to cure myself of a couple of -'incurable' (according to the NHS) conditions, (which has been wonderful) and maybe that could help someone. However I don't know if I have anything really to offer anyone else because my condition is so strange. I am still in shock that someone has actually read what I have written!

[BeeNumber12]

[Vix]

Hiya
I too would really like to hear about about your story, obviously only if you feel you can, the last thing we would want is to put pressure on you if its too hard to face. I too am struggling with many issues related to this illness that no one seems to understand and am trying to work it all out on my own without the help of any doctor so would be interested to hear if your problems resonate with me or any of the others on the site who are also struggling with unusual issues. I have been told by doctors I am a medical mystery and then just left to get on with it. I'm not a mystery they want to solve!
Vx