- Vasculitis Foundation - advocates for early diagnosis, leading edge treatment and ultimately a cure for all types of vasculitis
- Johns Hopkins Vasculitis Center; Henoch-Schöenlein purpura page
- Cleveland Clinic - Department if Rheumatic and Immunologic Diseases, HSP page
- National Kidney and Urologic Diseases and Information Clearinghouse - part of the National Institute of Health
- Yahoo Group - HSP-related - started in January 2000, this listserv has almost 10,000 posts from families dealing with HSP
- Nephcure Foundation - while not HSP specific, they are dedicated to research for kidney disease
- Caring Bridge - A great way to set up a site to notify friends and family about updates.
RESOURCES
Medication Log - Download this page to track your medications and dosages
HSP - Morning Report - prepared by Dr. Jennifer Bergquist, University of Chicago Comer Children’s Center Hospital (posted with permission)
HSP Information (For schools and organizations) - Print this page to give to teachers, school nurses, childcare providers, coaches, churches or even friends and family
GLOSSARY
Intussusception (in-tuh-suh-sep-shun)
Glomeruli (glom-yer-uh-lie)
P/C Ratio
Proteinuria
Hematuria
Testicular Torsion
IgA
Protein
Creatinine
Albumin
Steroids
Blood Pressure
Nephrotic Syndrome
Nephritic Syndrome
Biopsy
Crescents
Specialists that may get involved (or which you may wish to perhaps have involved) with care of HSP patients:
- General Pediatrics - whether a private physician, or at a hospital, you will probably get to know your general pediatrician very well as you travel this path. They are often the “quarterback” for the team that is overseeing the care of your HSP patient.
- Nephrologists - these doctors specialize in kidney function, which can be affected by HSP. Most HSP patients have regular urine tests to monitor the level of protein in their urine.
- Gastrointestinal Specialists - they focus on the digestive tract and will be monitoring for signs of intussusception, severe inflammation or bleeding in the gut.
- Rheumatologists -
- Hematologists - Usually working in partnership with cancer doctors (oncologists), they focus on issues relating to blood and can help monitor red and white blood cell count, protein in the blood and production of new cells from the bone marrow.
- Opthalmologists - Specializing in vision and eye care