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Cyclic Neutropenia

What is Cyclic Neutropenia?

Cyclic Neutropenia is a rare form of neutropenia.

 

Cyclic Neutropenia is a rare form of neutropenia.
Acknowledgement of Cyclic Neutropenia has not been added yet.
0.1http://www.orpha.net
Synonyms for Cyclic Neutropenia has not been added yet.
Cause of Cyclic Neutropenia has not been added yet.
Symptoms for Cyclic Neutropenia has not been added yet.
Diagnosis of Cyclic Neutropenia has not been added yet.
Diagnostic tests of Cyclic Neutropenia has not been added yet
Treatments of Cyclic Neutropenia has not been added yet.
Prognosis of Cyclic Neutropenia has not been added yet.
Tips or Suggestions of Cyclic Neutropenia has not been added yet.
References of Cyclic Neutropenia has not been added yet.
Feel very alone Created by shortygurl628
Last updated 25 Sep 2013, 04:46 AM

Posted by sebw
25 Sep 2013, 04:46 AM

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

Posted by ton76
24 Sep 2013, 11:14 AM

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

Posted by sebw
23 Sep 2013, 12:37 PM

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

View Full Thread (9 more posts)
New to CN Created by sebw
Last updated 23 Sep 2013, 12:44 PM

Posted by sebw
23 Sep 2013, 12:44 PM

Hey guys, im new to CN, since its guessed there's only 7,300 of us who have this, I would like to meet some of you! pop me a message anytime Seb

ELA2 Gene Created by iabou
Last updated 6 Sep 2009, 01:50 AM

Posted by flmomof3
6 Sep 2009, 01:50 AM

My son has and it came back negative. Not exactly sure what that means. My daughter has been diagnosed w/cyclic neutropenia and she is almost 5yrs - found it when she was 9 mos.. My youngest, 2 1/2 is also diagnosed w/it. His cycle isn't as predictable as my daughters. But both are very mild as they don't develop the symptoms that I read about. Have you been tested for the gene?

Posted by iabou
9 Feb 2009, 06:53 PM

wondered if anyone has been tested for the Cyclic Gene?

Abdominal pain Created by iabou
Last updated 10 Feb 2009, 04:48 PM

Posted by iabou
10 Feb 2009, 04:48 PM

about once a month ive been getting this horrible abdominal pain, the last few years I never told anyone about it. but recently Ive read about some serious intestinal issues with cyclic neutropenia, and im a bit worried. especially with my recent shut down of my intestines a few months ago.

Does anyone else go through this? Please, help! Created by veroamore
Last updated 9 Feb 2009, 08:42 PM

Posted by veroamore
9 Feb 2009, 08:42 PM

yeah, me too. i was constantly sick and i knew something was wrong with me but everyone else thought i was a hypochondriac...turns out i wasn't. they tracked my blood counts for a while too to see where my cycle was and then they gave me the shots. but the shots are definitely worth it because they are much better than being sick all the time.

Posted by iabou
9 Feb 2009, 06:50 PM

I haven't started getting the shots, I am currently on the "tracking" plan.... just seeing what my cycle is. it is really aggravating, my entire life i have been saying "there is somethign wrong with me, I am always sick" when i was a kid I almost died from a bacterial infection. This wasn't discovered until at 27, my digestive tract failed, and a few weeks later my dr decided to do a cbc. after 10 random tests by platelets and white count are all over the place....up and down!

Posted by veroamore
9 Feb 2009, 04:50 PM

i've heard that people taking the gcsf shots can get pretty fatigued from it. are you taking them? as for me, every time i take an injection i get really sick for about a day...headache, severe nausea, bone pain, etc. it didn't start until a while after i began the shots but my doctor doesn't know what it's from.

View Full Thread (2 more posts)
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Hi im seb, recently, feel free to have a chat with me anytime
46 years old, just diagnosed with this, but without the traditional markers of true Cyclicality. Need some help to figure this out!
not sure if i have chronic lyme (treated for 15 months on rotating antibiotics), 7 months chinese meds, now immunologist thinks i could have cyclic neutropenia. nothing is conclusive yet but it...
I'm 33 years old. I was diagnosed with Cyclic Neutropenia at 9 mos. I started taking Neupogen injections daily, 13 years ago for treatments.

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Discussion Forum

Feel very alone

Created by shortygurl628 | Last updated 25 Sep 2013, 04:46 AM

New to CN

Created by sebw | Last updated 23 Sep 2013, 12:44 PM

ELA2 Gene

Created by iabou | Last updated 6 Sep 2009, 01:50 AM

Abdominal pain

Created by iabou | Last updated 10 Feb 2009, 04:48 PM

Does anyone else go through this? Please, help!

Created by veroamore | Last updated 9 Feb 2009, 08:42 PM


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