Evans Symdrome

My son was diagnosed with Evans Syndrome at the age of 19 in September 2010 after a three year remission from chronic ITP. His spleen was removed in 8/07 after suffering from chronic ITP since he was 11 years old - 7 years! Been through Steroids, IGIV & Rituxin throughout the years. Now we are back on the roller coaster ride which seems to be be worse than the ITP one! He was placed on a high dose of steroids after his red count was 4.2 and his white count was 29. His platelets, thank God had stayed in the thousands (since his spleen was removed). He was tested for ALPS and is COOMBS positive. After a month of the high dose of steroids his counts were almost back to normal, but less than a month later his counts were down again.. So he was placed again on the darn steroids on December 2010. He is still on them and is almost done with this course of treatment, down to 20 mg a day. He hates them! But thank God he has a great out look in life. He is a full time college student, he is in his 3rd year and works part-time at Game Stop. As for me on the other hand, we are talking a totally different story, I've been researching and talking to his hematologist & oncologist the complications to Evans are very serious and even fatal! Very, Very, Worried! Alter this course of steroids, we are looking at a totally different course of treatment. Could anyone give me any advice or hope as to the outcome of Evan??

Hi - there are very few people here with Evans, so I doubt you'll get many responses. I'm sorry to hear about the diagnosis; it can be scary. Usually, it is manageable, so try to hang on to that hope. It's great that your son has a good outlook. I'm sure that will help tremendously. As a parent, I understand your fears and concerns.

Thank you so much for your response. You are correct, I have been reading the post treads and didn't see too many Evan Symdrone posts. Do you know of any other place where I can't get in touch with Evan's patients? I have been looking on online and only came up with this site. Again, Thanks for your response.

Grace

Grace:

You could try this one:

www.healthboards.com/boards/forumdisplay.php?f=73

or this one:

health.groups.yahoo.com/group/EvansSyndrome/messages/2564

I am one of the few people that has Evans Syndrome.I've had it since I was 10 years old (1952). Iam now 68 years old.It is manageable and you can get thru this.
If you wish to contact me,my name,address,phone no.etc. is on the mailing list.

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~