The PH1 of Kind video series is an incredible resource. Meet Isabelle, Luuk, Asha, and Will — kids from around the world who have been diagnosed with Primary Hyperoxaluria Type 1, as they experience a range of situations and cope with emotions as a result of their condition.
These videos bring kids into a world with imaginary and creative friends who are talking about all the things they are going through in a very fun and entertaining way. It reduces the isolation that kids might feel and gives them tools to communicate with their friends and family!
Isabelle’s Story: Living With PH1
Asha’s Story: Learning About Doctor’s Visits
Will’s Story: Learning To Be Confident
Luuk’s Story: Learning to Stay Positive
OHF Care Centers
Every single person living with Hyperoxaluria deserves the best care possible. It is important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized care and services in agreement with the OHF’s guidelines.
The OHF Care Centers Program is a growing network, and plans are being made to award other qualified centers.
Mayo Clinic Hyperoxaluria Center
200 First Street, SW
Rochester, MN 55905
Patient Assistance Programs
There may be assistance programs and resources that can help pay for some of the costs of living with hyperoxaluria. The assistance varies, each with its own set of eligibility criteria.
Tests for Diagnosis
When you or your health care provider suspect Hyperoxaluria, it’s time to get tested. Early diagnosis and management may reduce damage to your kidneys and overall health.
Two imaging tests for kidney stones are a CT scan which uses X-rays to picture the kidneys and an ultrasound which uses sound waves to get a picture of the kidney.
Glomerular Filtration Rate (GFR) measures how well the kidneys are removing wastes and excess fluid from the blood.
If kidney function is reduced, this test monitors the body pool size of oxalate in patients.
24 Hour Urine Test
Measures elevated oxalate levels to determine if you have signs of Hyperoxaluria.
No Charge Genetic Testing
Can establish a Primary Hyperoxaluria (PH) diagnosis with precise accuracy. The test is simple and eligible patients can be screened anywhere in the world. If you have a family history of PH, siblings and family members can also be screened. It’s that easy. To learn more, email Julie at Julieb@ohf.org.
Based on the outcome of your tests, your healthcare provider will determine whether your diagnosis is Primary, Enteric or Dietary Hyperoxaluria.