Hi, everyone. I just wanted to drop a note into the group
to let you know I just joined. I am already a member of
Evans_Syndrome@yahoogroups.com. Also, I am one of the administrators
for http://www.evanssyndrome.net (ESCN), as well as the Facebook group
for support of people whose lives have been touched by Evans.

By the way, there is another Facebook group that is called "Prayer to
Stop Evans Syndrome", for those so inclined to join.

I was diagnosed with Evans Syndrome 3 1/2 years ago, on my 44th
birthday. I've had problems with my immune system for most of my life,
and had a previous diagnosis of Hashimoto's thyroiditis. Since my
diagnosis of Evans Syndrome, I have also been diagnosed with
fibromyalgia and inactive lupus (SLE).

My treatment for Evans Syndrome began with transfusions and IVIg,
followed by IV prednisone. Upon release from the hospital, I was
treated with oral prednisone for seven (7) months. At that time, the
treatment failed, and my doctor put me on a round of Rituxin. I
responded favorably to the Rituxin, and am now in remission.

As a side note: Did you know that Rituxin is made from the ovaries of
genetically altered Chinse hamsters?

Four months after completion of my Rituxin treatments, I was
hospitalized with massive pulmonary emboli in both lungs. It turned
out I had something called Factor V Leiden, as well as a lupus trait
that causes hypercoagulation. Apparnetly my Evans Syndrome had been
keeping me from over-clotting.

My hemotologist is interested in finding someone else with Evans
Syndrome who also has Factor V Leiden. If you or your child has been
diagnosed with Factor V Leiden, please drop me a direct email at
PalemoonTwilight@..., so that I can forward that information on to him.

My own experience with Evans Syndrome has been no picnic. I have met
prejudices with people I work with because many of them don't
understand what it is, nor do they understand what "autoimmune
illness" means. My supervisor even asked me repeatedly, "So, how did
you catch this, again?" The ignorance I encountered in the workplace
only strengthened my resolve to do what I could with the ESCN website,
and to get the word out that Evans Syndrome and other illnesses like
it are not contagious. I started a volunteer group locally for people
who want to do work in the disabled community and work for advocacy of
the disabled.

My hemotologist says that treatments for Evans Syndrome and other
autoimmune illnesses will be rapidly changing over the next 5 years.
Researchers are looking at new ways to help patients, ways that in the
past have been impossible to explore. Only time will tell us what kind
of amazing treatments they come up with. Maybe they will even find a cure.

I wish you all the best.

- Constance (aka Palemoon Twilight)

"One should never consent to creep when one feels the impulse to
soar." - Helen Keller