Autoimmune Registry

[Rexz]

All,

I don't think this is off topic as it does pertain to possible research opportunities for Pernicious Anemia and other autoimmune diseases. I will be volunteering/representing the "Autoimmune Registry" at 2022 RARE Patient Advocacy Summit from 12 through 14 September in San Diego, California, USA.

globalgenes.org/event/rare-...

I just thought I would put this out there for consideration... I know many of you may already be participating but If you care to become a participate in medical research you might consider registering at

autoimmuneregistry.org/

Please read the patient tab and privacy statements and make sure you are comfortable with this.

autoimmune registry is a central clearing house for researchers an excerpt from the registry's website "autoimmuneregistry.org/rese... says...

"40% of clinical trials fail because researchers cannot find enough patients to participate. Without patients willing to participate in clinical research, we cannot find new drugs, new diagnostic tests, or new treatments. Your participation counts!

The Autoimmune Registry helps recruit patients like you for clinical research and clinical trials. When a trial begins, we contact you to see if you can participate. You won’t be able to participate in every study, but every study you participate in gets us a step closer to the tests, treatments and cures for autoimmune disease."

Best wishes, Rex

[EllaNore]

That's wonderful you're going to be representing PA. You're very knowledgeable. You'll do great. I'd like to participate in trials. Do you think they have them in Iowa?

[Rexz in reply to EllaNore]

EllaNore, does not matter where you are. Researchers from all over draw upon this database for participants. Actually Autoimmune Registry will never share your data with researchers directly but rather id a researcher identifies certain criteria and your data fits that then Autoimmune Registry will contact you and if you want to participate in that specific research you will contact them directly. So once in the database you will get to choose which research or trials you want to participate in if any. I do belong to several of these namely gastric cancer genetic research.

[Rexz in reply to Rexz]

Plus I thought the only thing in Iowa was corn!

[EllaNore in reply to Rexz]

We grow soy, corn and pigs!! Lolol

[EllaNore in reply to Rexz]

Ok. I'll register then. I've actually googled how to participate in something like this with no luck, so thank you for this link.

[wedgewood]

Your post is certainly not off -topic Rexs .P.A. patients have at least one auto-immune condition ( I prefer the word “ condition “ to disease! A disease sounds catching !) . It’s very unusual to have one auto-immune condition . I’m sure that contributing to knowledge on this topic will appeal to this forum . Thanks for passing that on . I had not heard of this organisation, but then I’m in U.K. .

[Rexz in reply to wedgewood]

Wedgewood, Yes, Yes, I absolutely agree, condition rather than disease is more appropriate.

Thank you for that suggestion/course correction!

Researchers from all over draw upon these participants.

[deniseinmilden]

Thank you for passing on this great opportunity!

All the best!

[Sleepybunny]

I wondered if it was worth contacting PAS and mentioning it to them although I guess they may know about it already.

Maybe they would put out a news item on PAS website?

PAS Contact Details

pernicious-anaemia-society....

[Rexz in reply to Sleepybunny]

Sleepbunny, That's a great idea. I will contact them through the link you provided.

Rex

[Rexz in reply to Rexz]

OK PAS has been contacted so we'll see...

[Jillymo]

Signed up. 👍

[Narwhal10]

Thanks ever so much Rexz,

Great post and good to hear from you. I do believe in research and that doesn’t necessarily have to be medication (drug) trials. It can be such as lifestyle factors, such as physical exercise with certain conditions or doing Sudoku for 10 minutes a day.

I am aware, although I cannot give the exact publication or source that it takes between 5 and aver10 years to diagnose an autoimmune disease. I believe this is within the U.K. I know that Coeliac U.K. reported 15 years for diagnosis. Having this malabsorption syndrome also means P.A./vitamin B12 deficiency.

I hope all is well with you and yours.

Sending my best wishes to you across the pond. 🐳

[Rexz]

Hello there Narwhal good to hear from you. Yep, exercise has been a huge part of my recovery. I actually think I am physically more well than I have been in years. Excepting some neuropathy, brain fog, fatigue and an assortment of other things I have to just power through. It also helps me mentally and is very calming to get out in nature. Here is sunrise from my hike yesterday.

San Gabriel Mountains in Southern California

[IsabelleFR]

Hi Rexz, thank you so much for the link. I registered and filled out my information, and that made me realize all the autoimmune conditions I have. These conditions are most likely interconnected and/or come from the same roots/causes. I hope autoimmune research will make progress so we can eventually have a cure for these conditions, instead of treating symptoms. Here's to hope!

Cheers from France

[Rexz in reply to IsabelleFR]

Isabelle, Welcome to the Guinea Pig club! and thank you as these research studies and trials need a large enough pool to be successful.

I took a read of your profile and yes many autoimmune conditions are associated with PA...some of them being Sjogren's Syndrome, Hashimoto's Thyroiditis, Alopecia to name some of them. I happen to have Hash and PA and just waiting for the next one to show up. Is interesting I also tested high for Mercury and Lead. Had all my amalgam fillings replaced and am now undergoing heavy metal chelation IVs to help get those heavy metals out of my system.

Anyway, thanks for your response. Best wishes, Rex

[IsabelleFR in reply to Rexz]

Hi Rex, LOL thank you and yes I'm glad to be part of the Guinea Pig club, if that helps the cause.

Just like you I'm waiting for the next autoimmune annoyance to show up, worried that the next one will be worse than the ones I already have. Don't know much about Hashimoto, except my dear mom had it. I see you too have intestinal metaplasia from autoimmune atrophic gastritis, I wish you good luck, I hope your last endoscopy results are good.

I haven't been tested for heavy metals (not sure where to go for that), but indeed in my case I'm convinced that my first autoimmune condition is linked to dental amalgams. In 1996, I was 29 years old, fit and healthy as one can be at that age, when I decided to have a few of my amalgam fillings removed for cosmetic purposes. The dentist chose instead to cover two of them with a porcelain cap. During dental session, I remember feeling the taste of metal in my mouth, but I didn't know any better. Two or three days later, after my morning shower, there were 2 big chunks of long hair that stayed on my towel and I realized with horror that I had two bald patches on my scalp. One week later, there were 5 bald patches. This just didn't make sense at all. I had a healthy life, not a smoker, eating healthy, running 3 or 4 times a week, zero stress, and that crazy thing happened.

Unfortunately at that time I didn't know any better. My best bet was, my alopecia was environmental related (my office was next door to a hairdresser, and I figured I somehow got an allergic reaction to their chemical products through the vent pipes). So I decided to work from home instead.

That was the beginning of my autoimmune troubles!

Sorry for the very long post.

Take care,