Polyarteritis Nodosa

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Polyarteritis Nodosa

Does anyone else have Polyarteritis Nodosa or Vasculitis? I'm waiting on a definite diagnosis from recent blood tests; the ones that have come back are normal but the more indepth ones will take a few weeks and I'm having a full body CT scan this week.

The gp I saw sent a note to Rheumatology and the Service Provider Clinician said: "There are many other more likely causes rather than a Rheumatological one" so I think they want to wait for all the blood test results to come back to confirm for definite."

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Visit website for recently discovered PAN Vasculitis.

This type of Vasculitis is thought to affect 1/3 of those affected by PAN Vasculitis. The genetic links to what is termed DADA2 were discovered in 2014. Very interesting story about the discovery and the hundreds of patients (most young children), families, physicians, and researchers internationally affected. There is much interest that other forms of Vasculitis may be genetic as well. New cases of DADA2 are discovered regularly.

This new field may be of interest to many current Vasculitis patients and medical professionals. Read the story of how a Nashville doctor discovered that two of his daughters are affected and his subsequent work in medicine and advocacy around the world. Read about the interesting patients, families and researchers involved and how they advocate for the benefit of all. This is inspirational for all of us suffering with rare diseases.

New research appears often - symptoms range widely as do the age groups and types of genetic abnormalities affected. There are both early onset and late onset disease.

The website for dada2.org is http://www.dada2.org. There is a group for patients and families on Facebook. #DADA2 , #RareDiseases , #Vasculitis , #GeneticDisorder , #GeneticCounselors , #GeneticDisorder , #GeneticTesting , #Rheumatology , #PolyarteritisNodosa , #PediatricStroke , #PediatricHypertension , #PediatricLiverDisease , #ADAdeficiency , # adenosine deaminase2 deficiency


Over 23 years of PAN Vasculitis now being likely rediagnosed as DADA2 Vasculitis

Just this week two of our family members diagnosed over 23 years ago as PAN Vasculitis have found through internet research, communication with DADA2.org, DADA2 foundation assistance and a quick blood test that their diagnosis is possibly being changed to the newly revealed (2014) rare type of Vasculitis DADA2. This will likely change not only our diagnosis but our treatment - a lot to absorb within a week! It took us at least 13 years originally to get diagnosed with Vasculitis as the cause of illness in our son and years for myself. I will share more on this as soon as genetic tests are completed and diagnosis is confirmed by physicians. I would rather not go into further detail until we are sure. Those who are interested in DADA2 should visit www.dada2.org for further information. #PANVasculitis , #DADA2 , #PolyarteritisNodosa

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