ESCN on Facebook is open to anyone diagnosed with Evans Syndrome (ES), as well as those whose lives have been touched by a person with ES. We hope to provide a way of networking with other ES people. Share your stories; experiences with physicians; medications you have used; which treatments have or have not worked for you; and so on. We hope to provide good information, as well as mental and emotional support in knowing that you are not alone in this illness.
This group is not administered by healthcare professionals, and should never take the place of your physician(s) or their opinion(s). We are every-day people, just like you. Our members are all ages, from every continent, and every level of education.
Evans Syndrome is an uncommon condition defined by the combination (either concurrently or sequentially) of an attack on two or more lines of blood, including red blood cells (Autoimmune Hemolytic anemia), platelets (Ideopathic Thrombocytopenia or ITP), and white blood cells, also known as leukocytes. This occurs when the immune system mistakenly targets these cells for destruction, and the spleen subsequently destroys them. Autoimmune cytopenia can be a sign of systemic autoimmune disease, such as Lupus or other connective tissue disorder, and the patient should be tested appropriately. (Mikhail Shtivelband, MD, PhD, and http://www.ncbi.nlm.nih.gov/pubmed/16398647)
Please take some time to complete our surveys (as they apply to you), located here:
Initial Survey: http://www.surveymonkey.com/s/C7NMKMM
General Population Survey: http://www.surveymonkey.com/s/G35NJFV
What do you need from the Evans Syndrome Community Network Survey: http://www.surveymonkey.com/s/F7XSSSH
North America Survey: http://www.surveymonkey.com/s/KCC7WR2
Europe Survey: http://www.surveymonkey.com/s/3HQ36J9
Adult with Evans Syndrome Survey: http://www.surveymonkey.com/s/6JW2Y83
You may be interested in reading some of our blog posts, which can be found here: http://evanssyndrome.blogspot.com/. We use the blog to share personal stories about our experiences with Evans Syndrome. We're always looking for new material to post, so if you would like to share, please let us know.
We have a real need for people who want to become more involved with the Evans Syndrome Community Network. If you would like to volunteer your skill or ability, please contact us directly.
Should you wish to contact us directly, for any reason, email the Evans Syndrome Community Network at
[email protected].
The Evans Syndrome Community Network is a non-profit organization. Currently we do not accept donations. Should you wish to donate to research efforts, please consider the Johns Hopkins Autoimmune Disease Research Center. An outline of how monies are spent may be found here: http://autoimmune.pathology.jhmi.edu/giving.cfm
ESCN's mission: To provide a safe place for networking between individuals whose lives have been impacted by Evans Syndrome (ES); to make available scientific and educational material, online and in medical environments, fostering learning about ES among our Community and the general public. We will assist families affected by ES with travel, lodging, and medical expenses; collaborate with other organizations that share our vision, and fund autoimmune research to benefit our international Community.
ESCN's Motto: Together we will make a difference, standing shoulder to shoulder.
shahrizat77
j1jewels
twister
winged_courage
Thanks for the colour love!
GabsGiggles
Post a Comment