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CDA Type 1

Marty Message
2 Mar 2012, 10:44 PM

Hi Sweetpea, Would be interested in corresponding with you about your experiences. My daughter was born in 1977 and her son has this disorder, born Aug.2011. I have sent her an invite to join rareshare. Nice to know that there is someone else in Canada with CDA 1. Marty
sweetpea Message
7 Mar 2012, 02:15 AM

Hi Marty, I'm sorry to hear about your grandson, when was he diagnosed? I obviously don't remember what it was like when I was diagnosed as a baby, but I imagine it can be quite stressful and difficult for a family. I personally haven't met anyone else yet with CDA1. I have to admit, it's not easy living with this disorder, and I have had to learn about it as I I would love to share all of the experiences and knowledge that I have in chance that I might be able to help. I work as a nurse, but even with my medical background, it is hard to understand everything that it means to have CDA. I don't know if you have done much research, but it is also difficult to find many quality studies. Why don't you send me an email and I'll tell you more about myself. My personal email is: Take care, Ashleigh
Marty Message
7 Mar 2012, 03:29 AM

Hi Ashleigh, Thank you for replying. I told my daughter about you today and will send you her email as well. She was excited to hear about you. We have all done some research on the disorder but like you say there are not many papers published on CDA 1. No one in the hospital home had ever heard of it. Greyson was diagnosed by the German Registry sometime in Dec. Some tests were done in Vancouver and another sample of bone marrow went to the Mayo clinic, which came back neg. for cancer. He had a very rough beginning but is now progressing very well and his Drs. are amazed. He is having Interferon injections 3X per week. He has has numerous blood transfusions but went 6 weeks before needing one about 3 weeks ago. From birth it was every 10 to 12 days. I'm sure you have lots to share and I really appreciate your reply and offer of help and support. Will send you an email and photo now. Marty
dvlnts Message
18 May 2012, 08:04 AM

My best wishes goes out to you. i have CDA type 2 wich is more common then then type 1.
Woodworj1 Message
18 May 2012, 02:08 PM

Hi there, we have a group in Yahoo Groups too of which everyone has type 2 with the exception of us 2 Canadians :P If you look for CDA (spelled out) support group you'll find us which is much more active :) Cheers, Jessica
Pat’s mom Message
22 Feb 2020, 01:35 AM

I am the parent of a little 8 year old boy who was diagnosed withCDA Type 1 as an infant. I have been trying to find out more about this condition but even his hemotologists have limited info. Right now he is doing awesome but I would like to know how this will affect him as an adult