Today from LUPUS.ORG - I believe any ... - Hughes Syndrome A...
Today from LUPUS.ORG - I believe any advances in Lupus research will help find a cure or better treatments for APS
I have the same belief.
My GP believes that APS and lupus are far more closely related than just , “ kissing cousins” as I like to jokingly say.
( I find myself sometimes having to explain it to doctors.)
I was pleasantly surprised he knew about it. He said, “ I’d say they they are more like evil twins.”
Thank you for posting this.
You do not say in your profile which country you are from.
I am from the US
Thank you very much for putting this article on here! MaryF
As you know, it was detected by Dr Graham RV Hughes, who is one of the most celebrated clinicians & researchers in SLE. Approximately, 25% of those with SLE also have Hughes Syndrome. It is not unusual for people to have more than one autoimmune disease.
One of the major problems for SLE is there are more than 20 genetic components. That isn't all. While some families have more than their fair share of autoimmune conditions, it is not solely genetic. Prof David Isenberg (UCH, London) & John Morrow liken it to a Card Game called Chance, where depending on the hand you are dealt, will depend on whether you get SLE, RA, Type 1 diabetes, MS etc
There's more. We don't understand autoimmunity. We don't understand fully T-cells & B-cells. We don't understand fully the inflammatory process & we don't understand how healthy patients can also have a positive ANA!
SLE is one of the most complex and confusing of diseases. Unless a doctor is actively looking for it, it may not be diagnosed, said Dr Graham RV Hughes. Many women for decades don't get a diagnosis - other than "it's all in the mind"! Sadly too, it is poorly taught at medical school. It is far from being rare - it's just undiagnosed because no two people will present in the same way!
There is a great deal of research in the UK and Israel.
With good wishes,
Ros
Thank you so much for you knowledge!
I had received a pessimistic reply to this post in one of my APS Facebook Groups which said APS research is underfunded and APS patients most likely won't benefit from the Lupus Research.
I believe ANY breakthroughs with Lupus research will help patients with other autoimmune diseases.
With AI and the speed with which knowledge can be shared around the world I am hopeful breakthroughs happen much faster.
Irene
Dr Daniel Wallace of Cedar Sinai Hospital in California notes that if SLE was predominantly a male disease there would be better funding! Nevertheless, research around the world continues. Knowledge of Autoimmune diseases and treatment has greatly changed in the last 50 years so there is every good reason to be hopeful!
