👣👣👣👣👣👣👣👣👣👣👣Lupus And Barefoot. 👣👣👣👣👣👣👣👣👣👣👣

[Tiras]

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Hi all:

The number 12 lupus fact is why I do the lupus studies. Years ago some one did a study for us. I will do studies for our future generations.

If I can help one person it is worth it!

👣👣👣👣👣👣Tiras👣👣👣👣👣👣

[EOLHPC]

YAY BFG👋👋👋👋

I hope your post attracts others here who are enrolled in studies...I would be v interested to see how many of us are doing this sort of thing

am enrolled in the BILAG study and just completed the paperwork of my latest annual review...soon will go to see the research rheumatologist & the research nurse for my annual interviews. I always learn lots at these interviews. Being part of this big important study means a great deal to me....at least I feel as if I'm giving something back

So I ❤ your post...and am greatly relating to your words

Here is a link to info about BILAG: This is a UK based group of lupus experts led by Prof David Isenberg that has been studying how disease activity can be accurately measured in clinical practice and also in clinical trials. This has been a long process of evolution, constantly refining the measures we use to quantify disease activity. The BILAG group is also a very cohesive group of lupus clinicians that has collaborated on many other studies.

lupus.org.uk/news-events/re...

🍀😘🍀😘 coco

[Tiras in reply to EOLHPC]

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Coco;

Thanks for the link.

We who are in studies go through a lot. As with my skin rash and blister study, my group 4 females and me the only male, we are totally exposed from head to toe literally! Yes, same time, same room, for 3 hours each session

It is worth all we go through. The information the medical staff gets from us may benefit someone. That's all that matters.

We benefit from what others in the past done for us!

👣👣👣👣Tiras👣👣👣👣

[EOLHPC in reply to Tiras]

😆 my exposure is from the ❤, bloods, soul & intelllect...yours is all those + full on physical! You really go ALL OUT for the good of generations to come: YAY BFG 🌟🌟🌟🌟👏👏👏👏🍀😘

[creaky]

Research is so important for us all, well done Tiras.

I've never been asked to take part in a lupus study, but I've been asked to for osteoarthritis last week, I suspect that they will find me not suitable though due to my lupus.

I hope that things are good for you at the moment, I was thinking of your garden this week, I have salad leaves growing in my raised veg trug over winter as it has a fitted poly tent. I picked the first batch this week 😀

Also I have some fresh herbs pots at one end so that I have a regular supply for the kitchen 👣👣👣 Helen

[Tiras in reply to creaky]

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Helen;

I agree research and studies are very important, where would we be without them?

I have also gotten started on my garden. I have some seeds planted for the plants to be ready to transplant to outside. We are having an extremely warm winter here, (good for going barefoot). It has been in the 70's degrees Fahrenheit here for over a week. The trees are starting to bud out. Still to early to plant veggies outside. We will have more cold days.

Enjoy your fresh vegetables and herbs!

👣👣👣👣Tiras👣👣👣👣

[Heatheric]

So true - my Dad had lupus and died aged 54 in 1980 - the only treatment he had was steroids probably over a period of 10 years - had kidney disease and enlarged heart so when he developed a bleeding stomach ulcer (steroids), they couldn't stop the bleeding but couldn't operate because that would also kill him! So, 40+ years later, we are in a much better place.

[Tiras in reply to Heatheric]

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Hearheric:

So true! Look how far we have came. So with us being involved in research s and studies it is important. Who knows by us helping, what the advancement will be in the next 40 years?

In 40 years, I might go barefoot because I want to. Not because I have to, due to lupus issues?

👣👣👣👣Tiras👣👣👣👣

[Buffy14 in reply to Tiras]

I am in some sort of research thing for kidney disease , I get seen by a specialist nurse after I have finished my consultant and she does different tests on me , makes my appointment last longer but if it helps that's fine , not sure what it is exactly I was just asked if i would take part .

[Tiras in reply to Buffy14]

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Buffy;

You are willing to take a part. That is as important as anything.

GOOD FOR YOU!

I thank you!

👣👣👣Tiras👣👣👣