Hello. I was diagnosed with cyclical neutropenia 3 years ago with no family history of it. I am now 19 years old. I feel like this illness rules my life and that there is nothing I can do to change it. I have been taking the injections but I feel like I have been sentenced to lifetime of managing something that seemingly came out of the blue. It makes me very sad a lot of the time because I know that I will never be able to do many of the things that I have dreamed of (such as extended backpacking trips where I would not be able to refrigerate the medication.) It just gets me very down sometimes and I wonder why this had to happen. Sometimes I do not take my injections because I am so frustrated but then I just get the symptoms that come along with the low blood counts. I keep hoping for a cure (preferably holistically) but have not found one. I just feel very alone with this and I was wondering if anyone else ever felt this way. Thanks!
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Cyclic Neutropenia
- By veroamore
- Posted November 15, 2008 at 10:38 am · 3 replies
- In Finding emotional support
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- By pepper1
- Posted November 16, 2008 at 10:52 am
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They now have refrigerators that plug into your car, and maybe an extended ice pack that you squeeze to activate. Paula
- By tamlyn
- Posted June 1, 2009 at 1:23 pm
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I was just diagnosed with cyclic neutropenia after having problems with reoccurring polyps in my sinus after surgery. I also have Crohn's disease and Intersistial Cystitis. This is all new to me and I am taking Bactrim right now. It is a lonely feeling and for me very confusing. Can you tell me a little bit about your symptoms and where you go to for information?
- By veroamore
- Posted June 2, 2009 at 5:43 pm
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It is very scary at first, but it gets easier, I promise. My symptoms include feeling a bit like I have the flu every 21 days or so for about a week as my blood counts get low. I feel very weak and sick and I get canker sores in my mouth pretty badly. Some people also get skin abscesses but I've never gotten those. I have been on Neupogen (a subcutaneous injection) for about 3 1/2 years and that stimulates the bone marrow to create neutrophils. Though there are a few side effects with some patients to Neupogen, it is well worth it. As long as I'm taking the injection (I have to take .5ml every 5 days but it varies from patient to patient) I don't get hardly any of the symptoms. Here is a good website with information- depts.washington.edu/registry/. I am a part of this registry and as along as I agree to let the doctors use my test results and what not to further their research, then I get my medication for free because it is VERY expensive. Also, I got very lucky with a great doctor but many have little to no knowledge of cyclic neutropenia since it is so rare (about 1 in 4,000,000 people have it) so be sure that your doctor is knowledgeable so that he/she can treat you with the best of care. Other than that, it is unfortunately a very lonely feeling. Since I've had it, I think I have met only 3 people with it and that was at a national conference for Neutropenia. Feel free to reply or ask me any more questions because I would be glad to help.
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