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I have Primary Sjogren's (started with symptoms 4 years ago and was diagnosed 2 1/2 years ago) and have been a member of your support group for about 10 months now. I was really looking for a group in search of a cure. So once I saw the posts on the site I became discouraged until I jumped in again a couple of months ago and made contact with SK; I sent her and others on the site information about Stem Cell Therapy being done in China as a cure for SS and even though there was skeptizism from one member because of "the difference in standards" between us and China (like we are the only country in the world that can create medical breakthroughs), everyone else was duly excited about the prospect of getting their lives back. I have since found and posted medical information on both Stem Cell and Gene Therapy being done in this country successfully (for at least the last 10-15 years and currently being done at a foundation in Maryland) to threat immune diseases. So, you might be wondering why I am writing to you. Since you created this site for SS sufferers I imagine that it was not only with the purpose of us sharing our woes, but also uniting us and helping us speak with one voice, in order to make SS a term as common as Breast Cancer and like the foundations that create awareness about Breast Cancer, which brings with it opportunity for events, celebrity spokes-people, and media coverage, I am hoping we would do the same. I know you have overcome a deadly illness, but do not know of your daily struggles; what I am, is sure that you want to help others.
It is not clear to me why you have an interest in SS, but the fact that you do and now have a foundation that can tear the lid off the prevalence of this disease is a ground breaking opportunity for all of us! I would like to be more directly connected to this organization to be able to spread the word in my small part of the world, which is San Francisco. Please allow me to come on board to help with the fight against SS and all autoimmune disease.
SG…I love your interest and help regarding a cure! :):)
I’ve been dismayed by the apparent lack of interest in this. My neuro (who I keep mentioning/sorry) that is interested in functional medicine, told me from the beginning he thinks there is a cure out there and to be hopeful. All my other doctors told me there wasn’t a cure and some said it was progressive.
As a side note: The SS site here seems to be one of many sites under the auspices of Ben’s friends. I started coming here to get info. on Trigeminal Neuralgia and the info. was/has been excellent. When I was dx’d with SS, eventually I came to this area (Ben’s Friends) as well. And I’ve already gotten some great help and hope from you, SK, Kaz…many many people. Thank goodness, as both of these illnesses have been very very difficult for me and both have been illnesses in which doctors are not always well informed. Thank goodness for the originator of this site (Ben?) and all those folks participating / helping one another. And thank you again for posting about the stem cell study/info.!
