Juvenile Onset Recurrent Respiratory Papillomatosis (JORRP)

What is Juvenile Onset Recurrent Respiratory Papillomatosis (JORRP)?

JORRP is a rare disease that causes repeated growth of papilloma (HPV 6 and/or HPV 11) in the aerodigestive tract.

What causes JORRP?

JORRP is caused by the HPV virus. Typically, JORRP is type HPV 6 and/or HPV 11. Current data shows that HPV 11 is more closely associated with an aggressive disease course. Surgical excision and biopsy are how JORRP is diagnosed. It is believed that a mother, who has been infected with HPV ,passes this virus onto her unborn child, or during the delivery process. Cesarean section is not a preventative option, as we do have patients with JORRP that were delivered by cesarean section.

Is there a cure for JORRP?

Currently, there is no cure for JORRP.

Is JORRP contagious to other children?

JORRP is not contagious to other children, nor can a sibling be infected by normal family interactions.

Is it safe to let my child play with other children?

Yes, it is safe to let a JORRP child play with other children.  It is not contagious. 

How can I make school easier for my JORRP child?

We encourage all parents to ask their school to put an IEP-Individual Education Plan (US terminology) in place for their child.  This will be helpful with days missed due to JORRP, communication issues, as well as accommodations in physical education courses. 

What is the treatment for JORRP?

Currently, the only approved treatment is repeated surgical interventions.  Some patients have found success by also using adjunct therapies.

Can JORRP be prevented?

Current data from Australia and the US both indicate that the HPV vaccine does lower the incidence rate of JORRP significantly.  Protected future mothers/fathers is the best way to prevent new JORRP cases.  For more information on the HPV vaccine click here.

Should my JORRP child still be given the HPV vaccine?

Yes! The HPV vaccine protects against nine different types of HPV, including those types responsible for 90% of cervical cancer cases. The vaccine will cause a robust immune response in your JORRP child, protecting them from those other HPV types. Some data also indicates that some JORRP children have had longer surgery intervals after taking the HPV vaccine series. The AAO and the BLA both encourage HPV vaccination of all JORRP children.

Breaking News!!!

RRPF President, Kim McClellan to speak at the White House Rare Disease Forum

Tonight! February 28th @ 5:30PM EST