Discussions By Condition: Blood conditions

calling other neutropenic folk

Posted In: Blood conditions 2 Replies
  • Posted By: Anonymous
  • July 15, 2006
  • 09:45 PM

Hello, this is my first time using a forum and also this site. I am 35 and was diagnosed with cyclical neutropenia 8 years ago. I have tried unsuccessfully to link up with other people who have this condition. I've been told I have this condition for life, but as it arrived spontaneously, I'd like to believe that it could leave the same way. I manage it as best as I can with Neupogen and good humour, but of course it does get me down. I am interested to hear about other people's experiences and how they cope. Also, I am writing a book about the subject and would be nice to have some neutropenic company along the way. Also, I can't think of a title for it, which irritates me on a daily basis. So, if you fancy a chat about this unusual condition, drop me a line!

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2 Replies:

  • Hi Laura, My name is Rolly,63 years old male. From New Zealand. I was dianosed with this problem three years ago. I keep a data base on the cycle.I suffer from chills and fevers. Depressions are manic. I feel anger at being a victim. Having colitus as well is very hard to bear. Feeling good days are rare.Hard to cope at times. I find a project and or challenge helps keeping my mind working on something. Mainly computers building repairing, trouble shooting. Please tell how do you cope with this ? I have theories as to why and how.All the best Rolly
    Anonymous 42789 Replies
    • November 22, 2006
    • 01:45 PM
    • 0
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  • My son has Neutropenia and was diagnosed w/ it at about 2 months of age. He became very sick w/ RSV when he was 8 wks old and was hospitalized for it, 3 weeks later he again became very sick and after visiting a different Dr. it was determined he had Neutropenia, his Neutrophil count was zero. He is now 2 years old and has been getting Neupogen injections since he was about 5 months old. He gets 3 shots each week, and his medicine is sent to us at no charge because he is enrolled in the Severe Chronic Neutropenia International Registry through Amgen, the manufacturer. He was hospitalized 3 times before he began the Neupogen but since starting it he has been very healthy. He is a regular developing, healthy looking boy that no one would know was sick. We have a generally healthy family and no background of Neutropenia. We live in Iowa and would be happy to connect w/ any other families dealing w/ this illness.
    Anonymous 42789 Replies
    • January 4, 2009
    • 10:53 PM
    • 0
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