Need Support

well my name is mona, i live in mesquite,tx. i was diagnosed with neutropenia at 17, i never knew i had it until i went for a regular checkup.  at that point my life changed forever.... i went the next day and had a bone marrow biopsy and was immediately put on neupogen, then i had to go to the hospital every day to get a CBC, later i was too sick that i had to be home schooled, but after awhile i went back and graduated. i continued seeing my hemotologist, and then the unexpected happen....i got pregnant. my docter told me my son had a 50/50 chance of not inheirting my disease, but unfourtunately he was not so lucky.,on the day we were sent home i learned that my son was neutropenic and like any other mother i broke down and cried. i thank GOD for my son every day, and yes it has been hard but as my son was been seen by his own hemotologist we leaned that we also have WHIM. our blood is being studied in washington and we hope as time goes by there is an alternative medicine to neupogen, for i hate him getting a shot every day. he also gets IV-IG once a month and sees his immunologist every 3 months, his hemotologist every 6 months and so on. our sickness has caused me so much stress because i never know what is goin to happen next, and i am very protective of him, especially in the winter...i would like to meet people and some tips on how they get thru it.

mona2514 mona2514
26-30, F
2 Responses Mar 10, 2010

Hi Mona, I was diagnosed with severe chronic neutropenia when I was nine. I was told that what I had would not be hereditory because no-one else in my family had it. When my husband and I had our daughter in 2005, she was also neutropenic. Just like you, I cried. Further investigations revealed that we both had WHIM syndrome. We are currently not taking any medications, and are coping reasonably well, although winter is a tough time. We often get secondary bacterial infections after a cold. One thing that having a chronic illness has taught me is that you only have one life, so get out there and do what you want to do and enjoy it!

WHIM is a form of severe congenital neutropenia (SCN) caused by dominant mutations in CXCR4. In addition to neutropenia though other white cells are also quite low and vaccine responses and antibody production are often poor. G-CSF (Neupogen) can raise the neutrophil count but won't correct the other cell types or help the antibody problem. Antibody from others (intravenous or subcutaneous immunoglobulins) can also help reduce the infections.

Hi Mona, <br />
<br />
My name is Ashly and would like to contact you as well. I think we have a lot in common and can understand each other. The best way to contact me is through my e-mail. I don't always have time to go online as my daughter is now 14 months old and running around the house all day, but I can check my e-mail at work. You can e-mail me at ashlyaguayo@gmail.com I hope to hear from you soon so we can share stories about our babies, you and my husband. Take care.