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TNF Receptor Associated Periodic Syndrome

What is TNF Receptor Associated Periodic Syndrome?

TNF Receptor Associated Periodic Syndrome (TRAPS) is a rare disorder characterized by periods of fever and chills along with abdominal pain, nausea and vomiting, appendicitis-like bowel obstruction, pseudocellulitis, and localized myalgia of the trunk or limbs.

 

TNF Receptor Associated Periodic Syndrome (TRAPS) is a rare disorder characterized by periods of fever and chills along with abdominal pain, nausea and vomiting, appendicitis-like bowel obstruction, pseudocellulitis, and localized myalgia of the trunk or limbs.
Acknowledgement of TNF Receptor Associated Periodic Syndrome has not been added yet.
Prevalence Information of TNF Receptor Associated Periodic Syndrome has not been added yet.
Synonyms for TNF Receptor Associated Periodic Syndrome has not been added yet.
Cause of TNF Receptor Associated Periodic Syndrome has not been added yet.
Symptoms for TNF Receptor Associated Periodic Syndrome has not been added yet.
Diagnosis of TNF Receptor Associated Periodic Syndrome has not been added yet.
Diagnostic tests of TNF Receptor Associated Periodic Syndrome has not been added yet
Treatments of TNF Receptor Associated Periodic Syndrome has not been added yet.
Prognosis of TNF Receptor Associated Periodic Syndrome has not been added yet.
Tips or Suggestions of TNF Receptor Associated Periodic Syndrome has not been added yet.
References of TNF Receptor Associated Periodic Syndrome has not been added yet.
Interested in sharing Created by stopcaidnow
Last updated 12 Feb 2011, 05:43 AM

Posted by stopcaidnow
12 Feb 2011, 05:43 AM

If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa Moreno-Dickinson CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com

Please visit Created by stopcaidnow
Last updated 10 Feb 2011, 01:54 PM

Posted by stopcaidnow
10 Feb 2011, 01:54 PM

Hi TNF Community, I just wanted to introduce myself and my Foundation. Please visit the site when you have a moment http://www.StopCAIDnow.com I just posted Project 1 which is very exciting for all of us touched by these Auto Inflammatory Diseases. Lisa President/CEO of StopCAIDnow

Posted by stopcaidnow
9 Feb 2011, 05:38 PM

http://www.stopcaidnow.com

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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.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

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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I'm the mother of two young daughters who have been diagnosed with TRAPS after symptoms appears when older was 18 months old. My eldest daughter has EDS-V and my 2nd eldest has...

53 year old male with TRAPS
Im Caterina,

 

 

I am a 25 yr old female, recently (August 2011) been diagnosed with TRAPS. Recently started Kineret (anakinra) injections on 16 Jan 2012

 

 

I live in the UK, my...
I am the President and Founder of StopCAIDnow,Inc. (www.stopcaidnow.com), in process of becoming a 501 (3) non-profit dedicated to educate, awareness diverse genetic testing, genomics and...
I have a 17 year old son who was diagnosed with TRAPS about 6 years ago. He was misdiagnosed originally, and has gone through multiple treatments which were somewhat effective, but not perfect. He...
I am the mother of a 13 year old boy, Aaron, who was diagnosed at age 6 with TRAPS after numerous bouts starting at 2 years. At the time there was no treatment for TRAPS and he was put on a waiting...
i am the adoptive mom of a little boy with Periodic Fever Syndrome. Currently he is in remission as far as the fevers go but still has the other symptoms - muscle pain and fatigue and mouth ulcers....
Diagnosed with TRAPS in 2008 at age 58. Probably misdiagnosed as rheumatic fever at age 5. In remission until age 30 when symptoms lasted a few months. In remission until age 53 when symptoms...
I have a 3-year-old son, Noah, that has been diagnosed with TRAPS and also has a lymphatic malformation involving his cheeks, lips, tongue, palate, and floor of mouth. I have yet to meet anyone...
I am the President and Founder of The NOMID Alliance, (www.nomidalliance.net), a 501 (c)(3) non-profit dedicated to improving awareness, care and treatment for patients with Cryopyrin-Associated...

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Interested in sharing

Created by stopcaidnow | Last updated 12 Feb 2011, 05:43 AM

Please visit

Created by stopcaidnow | Last updated 10 Feb 2011, 01:54 PM


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