Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Polyarteritis Nodosa

What is Polyarteritis Nodosa?

Polyarteritis Nodosa is inflammation of medium-sized arteriesdue to attacks by rogue immune cells.

 

Polyarteritis Nodosa is inflammation of medium-sized arteriesdue to attacks by rogue immune cells.
Acknowledgement of Polyarteritis Nodosa has not been added yet.
3.07http://www.orpha.net
Synonyms for Polyarteritis Nodosa has not been added yet.
Cause of Polyarteritis Nodosa has not been added yet.
Symptoms for Polyarteritis Nodosa has not been added yet.
Diagnosis of Polyarteritis Nodosa has not been added yet.
Diagnostic tests of Polyarteritis Nodosa has not been added yet
Treatments of Polyarteritis Nodosa has not been added yet.
Prognosis of Polyarteritis Nodosa has not been added yet.
Tips or Suggestions of Polyarteritis Nodosa has not been added yet.
References of Polyarteritis Nodosa has not been added yet.
how do you cope with this disease Created by Juanita
Last updated 20 Oct 2014, 01:52 AM

Posted by Juanita
20 Oct 2014, 01:52 AM

I find it hard to live with this disease. I have four grandchildren. And they all love me. I want to do many things with them . I get tired easily. I look normal but I am not. My husband even forgets sometimes that I am not well. He gets mad when he finds me lying down when he gets home from work. I try to keep a positive attitude. But many times I feel like no one understands what I am going through. Everytime I turn around it seems like I have another medical problem. Or I am taking another medicine. I hate it. I pray for strength. It does help. I just want to know how others like me keep positive while dealing with this disease.

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

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.

Community Leaders

 

Expert Questions

Ask a question

Community User List

Grandmother of 4. Mother of...
I am 35 and I was told I ha...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

how do you cope with this disease

Created by Juanita | Last updated 20 Oct 2014, 01:52 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.