I was recently diagnosed after 12 years of constantly being sick. IT took my daughter being born with no neutrophils for them to determine my problem. Now she is fine - they are testing my husband, me and her for Alloimmune to prove that she doesn't have CN. Anyway I am 35 and even with taking the shots I still get horrible mouth sores and infections all over my body....I get very sick and miss work and can't take care of my daughter. THe Dr. says he thinks I will recover at some point and we just needto figure out howto manage it...I hate knowing that I will feel horrible every 21 days or so...I get so tired...the strangest thing is that when I was pregnant my counts were normal...the Dr. said that something hormonal helped my counts...we might not have anymore babies though...even though my Dr would like to "study" me... Anyway...anyone need a buddy?

I know exactly how you feel. I am 20 and was diagnosed when I was 16. Still, after these few years, I hate giving myself the shots and I still get sick sometimes. I get awful mouth sores, infections on my body, just a general tired feeling...not only that, but I also feel like I can't do anything else when I'm sick. I feel like it's so embarrassing when I get sick like that, even though I know it's not my fault and it feels very lonely because there are so few people that have this disorder. How long have you been taking the shots? Maybe your symptoms will get better once you have been taking them for a while...mine seem to fluctuate, sometimes the shot even makes me feel sick for a day or so. I know it's a very helpless feeling when you feel like there's nothing you can do to stop your blood counts from changing.

Hi to you both. I was diagnosed at 9 mos of age with CN. I wasn't able to began Neupogen shots until 1997. I've currently been taking them daily for 13 years. While I do still suffer from infections, mouth sores, fatigue, and flu like symptoms- they are not as severe as my life before the shots. I'm extremely worried about the long term effects of Neupogen- there is little research available for patients that have been on it as long as I have. I tried 6 months ago to stop taking them to see how my immune system would do without them. It was horrible!! I've only been back on them for two months now and my system is still a mess. I have a 9 year old son that was born perfectly healthy. I have had genetic testing done on my family and we cannot trace CN to anyone. Dr.'s cannot explain why I have it. I've fought being sick my entire life. It is a very lonely diesease. No one understands when you tell them about it. I have just done my best to hide my sickness for this reason. Dr.s told me I would "outgrow" CN- but I've done right the opposite. The older I get- the more my symptoms become like they were before Neupogen. You two are the first people I've ever heard of having CN...to hear someone explain the symptoms I have has actually made me feel better.

I was diagnosed with CN in October 2009. I am hypothyroid and while monitoring my TSH levels they noticed that my WBC were 'not right.' I had blood tests 3x a week for 8 weeks and then a bone marrow biopsy to make the diagnosis. My Dr says my numbers aren't low enough to treat and he says that it's a stable disease that if it hasn't greatly affected me it probably never will. He also said that if I have children that it won't be passed on or effect them. He has also never treated anyone with CN. I don't have mouth infections but I have had other symptoms that I've read go hand in hand with CN. I am periodically really tired and feel like I am fighting something. I am 34 now, when I was about 11 or 12 I had a fever and was sick for a few months. The fever didn't last the whole time but I just remember being achy and tired. Eventually I went to Children's memorial in Chicago and the Dr there told my parents that it was psychosomatic. Eventually it went away. I am now convinced that it was from CN. About a year and a half ago I started having pain in my chest/shoulder/neck which is why I started seeking medical attention. They tested my thyroid and I was diagnosed with hashimotos and hypothyroid. Hashimotos is autoimmune disorder where my immune system sees my thyroid as foreign and attacks it. I've been taking meds to regulate my thyroid for over a year and my numbers are finally starting to level out. Because of the thyroid problem it seems like my Hematologist is attaching the fatigue to that. My endocrinologist is treating my thyroid but thinks I should see a Rheumatologist to deal with the autoimmune/inflammation. I just go in circles and each Specialist only wants to think about one specific part of my body and no one wants to treat my body as a whole. This is so frustrating. So now that I have rambeled I will get back to some questions. I don't really know anything about the genetic testing. Can anyone give me any info/insight. Also, is CN often passed on to children?

erint, I know how you feel concerning the need to see so many different doctors that do not want to treat your body as a whole. It makes matters even more difficult when you have a rare illness that a majority of doctors have never had to treat before. As far as genetics, I have heard that there is a 50% chance of passing CN to your children. I think you may find the Severe Chronic Neutropenia International Registry helpful. They are based in Washington and are the leaders on research for neutropenia. This is the website address: http://depts.washington.edu/registry/.

Thank You, I'll check it out.

erint There are medications that can cause CN. Not all people have it from genetics- Genetic testing can be done through your hematologist. It will require extensive medical records and family history. My parents had it done when I was diagnosed at nine months old. They could find no traces of CN in any of our family. I have a little sister that was born perfectly healthy. Also, I have a son myself. Against all orders from the Dr. my husband and I decided to get pregnant. I even took Neupogen during my pregnancy as well. My cild was born perfectly healthy. I was told it was a 50-50 chance of giving it to my son. My Dr. seems to think that my case of CN is not genetic- but no one can determine what caused it since I was sick from birth.He also said that if its not Genetic that is why I didn't pass it to my son?? (I am of great faith...and I know why I didn't pass it to my son and it has nothing to do with genetics or medicine!!) It took 9 months of testing me them to finally diagnose me with CN. I have no other chronic illnesses other than CN- and I will tell you that fatigue is definately a symptom!! My cycles are not a specific pattern like the typical definition of CN says. Sometimes it cycles every two weeks, sometimes 4. Or sometimes it will stay down for two weeks and up for 3. Its crazy...even on Nuepogen. My frustration with the hematologists I've seen- is that they push me to the side becasue its not "cancer" or life threatening and they don't do research. Their answer is always- its rare and nothing can be done about it. In my reading on the internet I've seen that there is not much research, but that most Dr.s in the Neutropenia foundation order bone scans and ct's of abdomens on CN patients. Never once have I had those. ANd I have been taking Neupogen injections for 13 years! I have not seen any research on people that have taken it this long..I'd love to know the effects of this long term usage.

thanks ton76, that gives me something more to think about. i understand your frustration with your hematologist, i feel the same way. it seems that because CN isn't 'terminal' and because they have a lot 'sicker' patients they don't want to put any additional effort into me as a patient. in addition, because my numbers aren't regularly low enough and i don't have chronic infections and i am not being treated i feel like my hematologist didn't even want to discuss it with me. he said, "no problem, you won't pass it onto your children." (yikes. so maybe i wouldn't but it sounds like there is a pretty good chance that i might.) all he said was that if i have a fever to call him and get on antibiotics. frustrating.

Ton76 - I am curious about your pregnancy...I am now in my 6 month...I am the original poster here...btw...I have had several infections and am not taking my neupogen currently. My hematologist decided I should not take it unless I have a fever...I have had several bad infectinos though and my ANC was less than 100. Curently, I know my #s have dropped again and I have several bad mouth ulcers. I am glad to hear your children do not have CN... I am in the same boat...we don't know how I got this, and my first child doesn't seem to have it so far. I am scared for trying to raise 2 young children when I am so fatigued and my docotrs think I may be even worse after I give birth...I am just looking for as much information and other people going through this as I can find...even my husband doesn't understand how lonely and frustrating this all is...

hi im 22 and was diagnosed 1.5 yrs ago. does anyone still read these? I would like to talk

@sebw I still check this site often hoping for new info to be posted.

@ton76 looking forward to it. ill have a think about what i know and see if it could be relevant to everyone! cheers!