Greetings, Wayne and Nikki. I'm sorry you had to join us under such awful
circumstances, but I want to welcome you to the group. I think you will find a
lot of knowledge and support here.

I, myself, have Evans Syndrome, diagnosed at the age of 44. I'm now 47. I was
treated with IViG and IV steroids when I was first hospitalized, and then
switched to oral steroids when I was discharged. When the doc tried to wean me
from steroids using pulse doses, I did OK for a couple of months until I had to
get a tetanus shot, and then my platelets took a nosedive. We decided that I
should try a treatment called Rituxin, which is given intravenously over 4
weeks, in 5 doses. With Rituxin, you either start to respond within 6 weeks
after the last dose, or you never respond to it. I did respond, and went into
remission.

About 5 months later, I was hospitalized with massive blood clots in my lungs. I
was in ICU for 2 weeks. They determined that I had Lupus hypercoagulation and
Factor V Leiden. Apparently, after my Evans Syndrome got under control, the
clotting factors were able to do their work, and I ended up in a real mess. This
is very IMPORTANT: Does your daughter have Factor V Leiden. Please let me know
if she does via my personal email at PalemoonTwilight@....

Now, I'm still in remission from Evans Syndrome, and I'll celebrate my 48th
birthday in May. I have to be on anticoagulants for the Lupus hypercoagulation
and Factor V Leiden. I also have Hashimoto's thyroiditis, fibromyalgia, and
dormant Lupus. I do have to deal with pain every day, and there are other meds.
But I'm alive and happy.

Since my Evans Syndrome diagnosis, I initiated a website with my fiance in order
to develop an informational database with regard to Evans
(http://www.EvansSyndrome.net/) and I recently started a Facebook Group for
Evans Syndrome. Be sure to check it out.

I'm sure your emotions and those of your daughter have gone up and down and up
and down during this time. Be encouraged. We are all here for you. And because
you are a strong family, and you love each other, all the better for your
daughter. You will get through this together.

Sincerely,
Constance McNamara
Administrator, Evans Syndrome Community Network
On Saturday, February 14, 2009, at 03:52PM, "Nikki" <whemenway1@...> wrote:
>Hi all,
>Our family is new to all of this; our 17 years old daughter has just
>been diagnosed with Evans, Lupis Anticoagulant, Anemia and several
>others. She was in ICU for 2 weeks and is now on a gang of stuff from
>blood thinners to steroids. They tried to lower the steroid dose and
>her platelet's dropped. We have no idea what to expect and would love
>some feedback.
>
>Thank you,
>Wayne and Nikki
>
>
>