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 Post subject: Rare diseases support
PostPosted: Tue Aug 07, 2012 6:27 pm 
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I had a quick look after such a discussion and I haven't found any -tell me if I am wrong?

Well in short, I have a stupid autoimmune disease (fortunately it's not fatal nor severe, so far I'm mostly just exhausted all the time); maybe there are other ppkers that live such situations?

I thought it could be great and conforting to share a space of our own where we could support each other, seek for sweet words or stupid jokes when we are going through hard times, ... whatever you want actually?

As for me all I need is confort (and certainly NO medical advice nor judgmental opinions of any kind) :P

hugs!

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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 07, 2012 8:14 pm 
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Sorry you're feeling crappy!

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 08, 2012 7:05 pm 
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thanks!
well don't worry I wouldn't say I feel crappy for the moment;
and, how do YOU feel? :-)

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 Post subject: Re: Rare diseases support
PostPosted: Wed Aug 08, 2012 7:21 pm 
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I don't have a disease, just a bunch of crepe that always wears me down. Not too bad lately since my summer has mostly consisted of sitting around on my butt all day.

Hugs and comfort!

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 Post subject: Re: Rare diseases support
PostPosted: Thu Aug 09, 2012 11:40 pm 
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Congenital glaucoma, yo!

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 7:12 am 
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Rowan wrote:
Congenital glaucoma, yo!


Wow! Classy!!!! (Now I feel ridiculous with Behçet Syndrom) :D

(hugs, etc!)

:o)

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 11:09 am 
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I don't have a rare disease (that I know of) but have an as-yet undiagnosed chronic condition. Can I join?

I just want to say wah wah wah. I am so tired of feeling at war with my body and with food. And I am tired of having test after test after test come up normal.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 11:43 am 
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I too have an autoimmune condition (lichen sclerosis) which isn't fatal or severe, just really annoying. I also have some food allergies that can knock me out for half a day at a time.


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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 12:51 pm 
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(Ooo lichen sclerosus! sounds fun as well!)

j-dub wrote:
I don't have a rare disease (that I know of) but have an as-yet undiagnosed chronic condition. Can I join?


well since we are not sure your stuff is rare I'm afaid you can't! :D

seriously: thats sucks, not to know what you have :-(
at least it was luck for me that my general practitionner immediately suspected bd -I know several who had had to wait years before diagnosis :(

so: hugz!!!!!!!! hope they will find out soon

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 1:00 pm 
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I don't have anything, but my mom has lupus. It was really hard for a few years, but she is starting to feel a lot better over the past year or so it seems! She even gets to go off one of her medications.

It's also scary for me because my doctor's have told me they simply don't know if autoimmune diseases are passed genetically, so I just get to wait and see. Wooo.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 1:33 pm 
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I don't have a disease either but chronic pain from fibromyalgia / myofascial pain and frozen shoulder. My shoulders are pushing two years of chronic hurting and it sucks not being able to reach for shiitake.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 4:53 pm 
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8ball wrote:
I too have an autoimmune condition (lichen sclerosis) which isn't fatal or severe, just really annoying. I also have some food allergies that can knock me out for half a day at a time.


Whoop Whoop!

I mean, yeah, good times. Its not super rare in post menopausal ladies. Sadly, I'm not post menopausal.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 5:38 pm 
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Autosomal dominant polycystic kidney disease with liver involvement. So far, my kidney/liver functions are within normal range with the only symptoms being pain in those organs (not chronic, but occasional, especially if I'm tired/worn down/getting sick). It's progressive and uncurable, though, so it's just a waiting game until my kidneys jump out and say "BOO!" Inherited from my mom who will likely be starting dialysis in the near future. (Her nephrologist can't say exactly when; could be in a month or two, could be next year.)

I know this is not the same as living with a condition/disease that knocks you for a loop on a regular basis. My partner is living with severe Crohn's and I would do anything to take away the pain and exhaustion he deals with every day.

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Last edited by lepelaar on Sun Aug 12, 2012 5:49 pm, edited 1 time in total.

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 Post subject: Re: Rare diseases support
PostPosted: Sun Aug 12, 2012 5:41 pm 
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Ehlers Danlos Syndrome. Symptoms haven't been too bad lately, but I'm kind of expecting a flare-up when the new semester starts.


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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 13, 2012 3:27 pm 
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lycophyte wrote:
8ball wrote:
I too have an autoimmune condition (lichen sclerosis) which isn't fatal or severe, just really annoying. I also have some food allergies that can knock me out for half a day at a time.


Whoop Whoop!

I mean, yeah, good times. Its not super rare in post menopausal ladies. Sadly, I'm not post menopausal.


Me either. I was diagnosed at 28 after having symptoms for a year that I thought were thrush. I dread to think how much I spent on Canestin!


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 Post subject: Re: Rare diseases support
PostPosted: Mon Aug 13, 2012 6:52 pm 
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Lepelaar, how were you diagnosed when you found out about the autosomal polycystic kidney disease? My mom has it and has been through the dialysis and thankfully recieved a transplant after being on the list. I'm worried about my chances of having it too, but I haven't gotten any real responses from doctors as to whether or not to be worried about it now or how to find out.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 14, 2012 3:01 am 
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vegetable_assassin wrote:
Lepelaar, how were you diagnosed when you found out about the autosomal polycystic kidney disease? My mom has it and has been through the dialysis and thankfully recieved a transplant after being on the list. I'm worried about my chances of having it too, but I haven't gotten any real responses from doctors as to whether or not to be worried about it now or how to find out.


Vegetable_assassin, glad to hear your mom was able to get a transplant, and I hope she's doing well now! Can I ask how old she is? My mom has been really lucky in that the progression has been fairly slow. She just turned 70 and they're just talking about dialysis now. But I know for a lot of people with PKD, the kidneys start to fail a lot earlier.

Those doctors sound really unhelpful. Are you talking to GPs or kidney specialists. It could be the GPs just aren't well informed about the disease. Anyway, as I understand it, if one parent has ADPKD, there's a 50% chance of the children having it. I've got it, but my sister doesn't. The test to find out is, luckily, simple and painless: an abdominal sonogram. They should be able to see the cysts on a sonogram even when they're still quite small. So if and when you're ready to be tested, that's what you'll need to ask for.

After my mom got her diagnosis, it took me several years to get up the nerve to get tested. Because there's not much that can be done to halt the progression, part of me didn't want to know. But I have to say, finding out (even though I didn't get the all-clear I was hoping for) was a relief. It had been hanging over my head for so long, it was good to finally have an answer, you know?

One positive note: there's some indication that a diet low in animal protein can help slow the progression of the disease, and that soy protein can actually help! So we've got a head start on eating right for the disease.

Anyway, if you ever need someone to talk to about this, please feel free to PM me!

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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 14, 2012 4:32 am 
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I'm not really sure how rare it is, but I just got diagnosed with Crohn's disease.

I'm feeling pretty good at the moment (although I still get quite a lot of stomach pain), but only because they have mega dosed me up on steroids to try and get rid of some massive inflammation that they found, but that's only a short-term fix, so I'm making the most of feeling well while I still do.

It kind of sucks, but there are far worse things I could have, and there's nothing one can really do about it. So, yeah.

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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 14, 2012 6:43 am 
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I have two not-rare diseases, so is there a loophole for me? I have ulcerative colitis and epilepsy, and while they're both currently under control with meds they mess with my life in different (and contradicting) ways when they're acting up, and I feel I have to plan my life around "what if" which is annoying. But as Disappearing Ink said, there's worse things to have.


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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 14, 2012 9:51 am 
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Sacroiliac joint dysfunction!

I wouldn't call this a disease let alone rare. But more of an ailment that likes to bother me. My left hip and SI joint get inflamed and it causes general pain, discomfort, leg pain, sciatica type symptoms, and as a result I can't eat gluten anymore. Fun times!

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 Post subject: Re: Rare diseases support
PostPosted: Tue Aug 14, 2012 10:45 am 
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8ball wrote:
lycophyte wrote:
8ball wrote:
I too have an autoimmune condition (lichen sclerosis) which isn't fatal or severe, just really annoying. I also have some food allergies that can knock me out for half a day at a time.


Whoop Whoop!

I mean, yeah, good times. Its not super rare in post menopausal ladies. Sadly, I'm not post menopausal.


Me either. I was diagnosed at 28 after having symptoms for a year that I thought were thrush. I dread to think how much I spent on Canestin!


I mostly used tea tree oil, which was at least nicely tingly. Yeah, I might have started with the itchy back when I was like 20. That means the first time I was diagnosed (but didn't remember or have it explained well enough for me and needed to be re-diagnosed and no other docs did) at 26, I got a steroid cream, but then the cream ran out and no other docs prescribed it. I brought the cream and even gave the explanation of my first doc, just didn't remember the exact name (its like eczema, but here! I got this cream, see the tube!), and so it took til I was 32 to get the re-diagnoses and a continuing prescription of the cream (which I mostly don't use anymore, I try and use more vit e oil, jojoba, coconut oil and after sun burn aloe stuff). I know I should have done better at remembering the diagnosis the first time, but the following docs should have tried a little harder too, instead of just waving it off.

Ten years of that! Gah!

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 Post subject: Re: Rare diseases support
PostPosted: Thu Aug 16, 2012 3:39 pm 
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Hi everyone!
I'm still hiding Dr B. in the closet the best I can.
(some think I'm drunk all day long! Actually I fear people's reactions)
How do you deal with the "telling to people" part?

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 12:36 pm 
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I have a mysterious red spot on my foot.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 2:04 pm 
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OMG I'm speachless.

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 Post subject: Re: Rare diseases support
PostPosted: Fri Aug 17, 2012 2:37 pm 
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Why? Is it cancer?


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