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Genetic and Rare Diseases Information Center (GARD)

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Henoch-Schonlein purpura


Other Names for this Disease
  • Anaphylactoid purpura
  • Henoch Schonlein purpura
  • Purpura, Schonlein-Henoch
  • Vascular purpura
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Your Question

I was first diagnosed with Henoch-Schonlein purpura at age 10.  The disease has been occurring more frequently and worsening over the past 10 years.  It is my understanding that this condition is not as common in adults as it is in children.  I am treated with steroids when needed, but I am trying to find out if there are any other effective treatments for this condition.   Do you know of any treatment alternatives, preventions, or research studies that may be helpful?  Have there been any genetic studies?  Do I need to fear that my children will get this disease?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

If Henoch-Schonlein purpura more common in children, why do I still have symptoms of this disease as an adult?

Henoch-Schonlein purpura (HSP) does affect children more frequently than adults.  In most affected individuals, the condition goes away on its own.  However, HSP develops into a chronic condition in up to 5% of individuals, which means they continue to have symptoms into adulthood.[1]
Last updated: 4/17/2013

What treatments are available for Henoch-Schonlein purpura?

Unfortunately, there is no cure for Henoch-Schonlein purpura (HSP).  Treatments aim to relieve the symptoms of this condition.  For example, non-steroidal anti-inflammatory drugs (NSAIDs) or corticosteroids (such as prednisone) may be used to relieve pain.  If the kidneys are severely affected in an individual with HSP, immunosuppressive medications, such as cyclophosphamide, may be prescribed.[2][1]  In rare cases, individuals with HSP may need to be hospitalized if they experience severe abdominal pain, bleeding from the digestive tract, or kidney problems.[1]
Last updated: 4/14/2013

Are there any research studies for individuals with Henoch-Schonlein purpura?

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Currently, 4 clinical trials are identified as enrolling individuals with Henoch-Schonlein purpura. To find these trials, click on the link above and use "Henoch-Schonlein purpura" as your search term. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more. Check this site often for regular updates.

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling 1-800-411-1222 to speak with a specialist, who can help you determine if you are eligible for any clinical trials.

Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Toll-free: 1-800-411-1222
Fax: 301-480-9793
E-mail: prpl@mail.cc.nih.gov
Web site:  http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the ClinicalTrials.gov Web page. Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.

Last updated: 4/17/2013

Can Henoch-Schonlein purpura be inherited?

The cause of Henoch-Schonlein purpura is currently unknown.  Some evidence suggests that genetic predisposition may contribute to the development of this disease in some cases.  Only a few families with multiple relatives affected by HSP have been reported in the medical literature.  The association between particular genes and a slight increase in the chance of developing HSP has not been proven.[3]
Last updated: 4/14/2013

References