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TOPIC: Evan's Syndrome

Evan's Syndrome 8 years 10 months ago #8887

  • Chloe_Leigh
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Hey I was diagnosed with ITP when I was 12. then 3 weeks later they found out it wasn't just ITP but also autoimmune hemolytic anemia, a.k.a. Evan's Syndrome. I've been looking a little on here and it seems it's mostly ITP, but I didn't know. I was on IVIG for a while and bounced between school and hospital (mainly hospital like a 15:1 ratio.) My counts were 6. My hemaglobin was 8.5 and red cells were 3. Then I was put on 80mg of prednisone. And, unfortunately, last year I was diagnosed with Juvinile Rhuematoid Arthritis, a result of autoimmune "tag-alongs" so to speak. Now I'm on chemo. But gotta look on the bright side, not in the hospital! ;)
-Chloe

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Re:Evan's Syndrome 8 years 10 months ago #8895

  • server
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  • newcreationchangingdaily
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Hello Chloe :)
How old are you now? Have you had any other treatments besides Prednisone? I don't know anything about ES or JRA, but I like your attitude! Keep it up, and stay strong!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:Evan's Syndrome 8 years 10 months ago #8910

  • Chloe_Leigh
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I am 14 and I haven't been on anything else for ES but my Rhuematologist said that the chemotherapy I am currently on could be keeping my platelet and red cell counts up. Either way blood is good! :laugh:
-Chloe

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Re:Evan's Syndrome 8 years 10 months ago #9002

  • wildroseao@aol.com
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Hi Chloe--
We've had folks with Evans syndrome on these boards for years, though you guys are fewer in number than just 'straight' ITP. From what I understand, Evans syndrome is diagnosed when two or more blood components are low--like red blood cells and platelets.

Anyway, what is the 'chemo' you are on? Rituxan, by any chance??? I have seen Rituxan work very well for at least one young man with Evans: James, Gabrielle's son. They used to post regularly, but I haven't seen anything from them in years. He had Rituxan twice--both times, nice lengthy remissions. I'm assuming (and you know how you spell assume!) that he's still in the second of these lengthy remissions.

My daughter received Rituxan--standard 4 doses--in 2002, when she was 15, after a year of ITP ups and downs. She's still in remission eight years later! :silly: Oh, and I put chemo in quotes above, because Rituxan is not a typical chemo with all those nasty side-effects. Traditional chemo destroys more than just cancer; Rituxan targets T and B cells specifically. I've read they are trying Rituxan with other auto-immune disorders, and it has helped some of them! I hope JRA is one of those!

To infinity and beyond with those platelets, girl! B) Ann, Caitlin's (now 23) Mom

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Re:Evan's Syndrome 8 years 10 months ago #9022

  • Chloe_Leigh
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I take Methotexate for my JRA, I have that once a week. I took steroids and 10/15/10 was my first full year of remission! I'm not sure if it counts, since I've been on medication since then, but I'll take what I can get!!! :P

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Re:Evan's Syndrome 8 years 10 months ago #9030

  • Angel85
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Hi Chloe, I must say reading your posts, you seem very wise beyond your years and seem to be dealing with your medical problems very well. You sound very mature and have a positive outlook. I have never heard of Evan's Sndrom, but your always welcome here. I don't have ITP either, I have something called T.A.R syndrome which means I was born with low platelets and also without the radius bone in my arms. This forum has lots of people with lots of experience about low platelet counts, so we all here if u need any advise or help, don't hesitate to ask.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:Evan's Syndrome 8 years 10 months ago #9031

  • Chloe_Leigh
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Thanks, at my hospital, the Hematology and Oncology are grouped together so we get to do a LOT of fun stuff like summer camp, Halloween parties, Christmas parties, ect. So I have friends with all sorts of stuff, One of my friends has sickle cell, so it's fun to get together and learn about the different diseases! I actually know a few people with ITP and so it's good in that perspective that I have people to talk to and relate with. That's really the harddest part, Ithink, because there are so few people with Evan's Syndrome, I've never met anyone with it, just talked to them on Carepages. That's why Iam so thrilled to find this site, because everyone has some sort of platelet disorder.

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Re: Evan's Syndrome 7 years 11 months ago #18306

  • marlig
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Hey girl! I have recently been diagnosed with Evan's syndrome and have had ITP for a few months. It's not nearly as severe as you have had it but I've gotten into the teens with my platelets and I have a hyper-vagus nerve so I pass out a lot :/ I'm here for you!

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Re: Evan's Syndrome 7 years 4 months ago #24043

  • PalemoonTwilight
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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~
"Sometimes the smallest of whispers can be heard above all the cacophony." - Palemoon Twilight
www.facebook.com/groups/EvansSyndromeCommunityNetwork/

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