I share with you one of the latest research that seems to bring some light to the early prevention and diagnosis of lupus. Hopefully very soon this can become a reality in hospitals.
Although we do not yet have a cure, it may soon be possible to diagnose the disease or the development of the disease with a simple blood protein test.
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New technique identifies pathogenic particles in the blood
Date:
October 15, 2021
Source:
Aarhus University
Summary:
Researchers can find signs of whether a person is on the way to developing the disease Lupus -- or is already ill. The revolutionary technique can be an important tool for diagnosing more autoimmune diseases.
Hi Naladog - hope you are doing as OK as possible. Thanks for posting this article.
I am interested in particular as I was advised by my GP surgery that my red blood cells are large and at first they were concerned.. but have decided it is "because I'm on methotrexate". How they worked that out I didn't ask. All I know is the inflammation in my body is becoming pretty bad these days.. especially night time when I am unable to sleep well from what we think, on top of everything else I have going on, is erythromelalgia.
The article in your link states: "We can see that the patients have an elevated proportion of the large particles in the blood. Because of their size, these are distributed right at the edge of the blood vessel, where they can potentially end up in the vessel wall and create inflammation". Are you clear what protein they are talking about? I googled and got this "A total serum protein test measures the total amount of protein in the blood. It also measures the amounts of two major groups of proteins in the blood: albumin and globulin. Albumin. This is made mainly in the liver. It helps keep the blood from leaking out of blood vessels."
I just wondered if it all made more sense to you.. The article isn't for us patients obviously as they aren't spelling it all out and presumably clinicians will know exactly what it all means. It would be great to understand it better if you have any ideas?
Thank you for your message and I am sorry to hear that you are not feeling well.
Unfortunately, the research does not specify what kind of particles they are, but it does indicate that they are unknown so far and with their technology they can detect them. Perhaps as they get more consolidated results they will be able to report what specific particles or proteins they are. Honestly, I don't know any more than you do.
I wanted to share this article more than anything so that we can remain hopeful and feel grateful for the research that is being done for both lupus and other autoimmune diseases, also so that we can share it and talk to our doctors and get them involved, some even to let them know about it;-).
I hope you all get on as well as possible, I'm trying too.
In my opinion, collaboration at International level would be best. I totally agree. I am from Spain but I have been in the UK for more than six years.
In Spain there is also a lupus federation like lupus UK that is very active. It is called Felupus and they are achieving amazing things with the help of internists, immunologists and rheumatologists from all over Spain.
They are setting up whole autoimmune units in certain hospitals and it really is a great help to them and to the patients because it is all totally coordinated. They do a lot of conferences to raise awareness and information about the disease nationally, by communities and on social media. Also, a few days ago the news came out that the courts have granted disability to a patient with lupus. This creates a great precedent.
I don't know if there are such autoimmune units in the UK as well.
In my case the GP, after much insistence, sent me from one specialist to another and each one only knows and tests their own and they don't refer you to the others. They also don't write down everything they tell you in the consultation, and not all the doctors have access to your whole history (or so they say) so it's horrible to have to repeat your whole history over and over again. It's devastating when you go and you see someone different and they only look at the results of the tests, they don't answer your questions because sometimes they honestly say they don't know and tell you that due to the pandemic they can't do any more tests or that there is a long waiting list and they offer you the private one.
The truth is that these are complicated diseases but I firmly believe that together we can achieve much more.
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