I got the most exciting email EVER today from23andMe. It said,
Lupus is a chronic, autoimmune disease that can affect many different parts of the body, such as the skin, joints and various organs. This happens when the body's immune system attacks its own tissue and organs, resulting in inflammation. It's a difficult disease to diagnose because symptoms vary significantly from person to person, and they often mimic other illnesses. Options for treatment are challenging given the lack of specific medicines to treat lupus and the side-effects of current medications.
In other words, 23andMe has partnered with Pfizer -- as well as lupus researchers all over the world -- to do the most comprehensive study ever on lupus and genetics. This will provide new information about how your genes and environment could relate to lupus medicine, treatment and progression.
My amazing, brilliant, hilarious and beautiful sister Kari suffers from lupus. And she has tried multiple times to get involved in research. But each time, she gave up -- study participation would have required countless hours of driving and disrupted her life as much as the disease itself!
But this study is different. You can participate in this study from home. It takes less than 90 minutes. It's anonymous. All you have to do is spit in a tube (which they mail you, free of charge) and answer a few questions online.
If you're eligible to participate, 23andMe will send you their DNA testing kit, which normally costs $99 for free. (Including shipping both ways.) AND they will pay you $50 for your time. AND you will be helping advance lupus research around the world. This truly is one of the most exciting things ever. So if you have lupus, go ahead and click this button:
And get yourself signed up. Then share this post with all of your social networks so they sign up, too. More data = more information = better treatments sooner.
Do you suffer from lupus? Do you have any advice or questions for other lupus patients? Share it in the comments section, below.
4 Comments
As a geneticist I think this is great. If I had lupus I would definitely participate. I have already done 23andMe (I paid for my kit) but have participated in their research by filling out many of their surveys. Their platform has allowed geneticists to get access to much larger datasets than they could through a traditional study where they get a few hundred patients to come to the university and participate in a single study. Their platform has allowed geneticists to recruit many thousands of patients in other studies, which is important because it gives much more statistical power. The more patients, the more statistical power, the more likely you are to find genetic variants that are important for the disease. I highly encourage anyone with lupus to participate in this study (I am in now way affiliated with 23andMe other than being their customer and I don't work on lupus. I am currently a genetics PhD student at the Stanford University School of Medicine. I just think this is a great opportunity for those with the disease to get involved in research about it.).
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Linda
7/23/2016 11:54:49 am
I'm trying to enroll in the 23 and me and lupus study but am unable.
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dorothy
10/24/2016 07:53:10 pm
tried to enroll in 23 and me. is the program still available
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9/11/2016 10:09:24 pm
I have lupus since 2000, in 2002 I had a liver transplant. I have painful dry redness on my face, nose and chin. Please give me the opportunity to help others and me. Thank you
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