No more… lupus

by Alexey Bersenev on January 29, 2012 · 2 comments

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Two years ago I’ve asked patients, who underwent experimental stem cell treatments, to unite and share experience. Patients could use existent platforms, such as Patients Like Me or create their own network. I think, it’s very important for both sides – patients and professionals, not only read reports in the literature, but also hear patients themselves. Nobody can describe the outcome better then patients themselves.

If you look at internet, you can find a lot of testimonials from patients who underwent commercial “stem cell treatment”. I don’t trust these testimonials. What we’re really missing is a voice of patients from regulated clinical trials. Today I’d like to share one of the best patient’s vlogs I’ve ever seen.

Tremia Appling underwent hematopoietic stem cell transplant for treatment of lupus as part of FDA-approved Phase 2 trial in Northwestern University. From her personal vlog:

A day in the life vlog about living with, surviving through and battling against lupus everyday of my life. On 3-31-11 I had a autologous stem cell transplant and there are no longer any signs, markers, indicators or symptoms of Lupus. However, my story continues as i continue to battle life threatening infections.

After transplant she was carefully recording all changes in her health condition and uploaded it on YouTube. It’s an excellent video diary. A great source of useful information for patients, researchers, physicians and medical students! I think, this is really good way to share information. It’s very educational, but also very emotional. I really want to see more vlogs like that in the future.

This is one of her recent videos:

{ 2 comments… read them below or add one }

Denis October 10, 2012 at 5:18 am

Hi there where did you get the stem cell therapy my partners suffers from a lot of those that you mentioned

Cheers from Australia

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Gary Brezonick March 29, 2016 at 7:26 am

My son is 23 years old, and has been diagnosed with severe MAS combined with Lupus and has been treated by many doctors in several states including the Mayo Clinic in Phoenix Az. He suffers daily and is unable to do any physical activities and cannot lead a normal life. Could you please help us and advise us on possible Stem Cell treatment

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