It is not easy to enter the world of kidney disease, let alone a rare one.
When you or a loved one is diagnosed with Primary Hyperoxaluria (PH) or Enteric Hyperoxaluria (EH), the shockwaves that follow can disrupt life, work and relationships. You probably feel overwhelmed but we promise the Oxalosis and Hyperoxaluria Foundation (OHF) is here for you. Knowledge is power, so let’s get started.
“Feeling desperate, scared and alone we searched for information to try to educate ourselves on a disease no one knew anything about. Finding and connecting with the OHF has been a life-saver for us. Knowing that help is always within reach, we can now focus our attention on caring for our children.”
– Kristi, Mom of patient
Daily Management
Good health care is always a team effort—especially for people living with Hyperoxaluria. You and your family are the most important members of the care team. You can take an active role in your care by learning all you can and taking part in your treatment plan. Since Hyperoxaluria affects everyone differently, it is important to work with each member of the health care team to create a personalized management program.
Establishing a well-coordinated care team will help you manage different phases that may evolve.
Nephrologist
Experts that specializes in the diagnosis and treatment of ailments that affect the kidneys like Hyperoxaluria. Many people may not realize how prone their kidneys could be to issues such as kidney stones or kidney failure, your nephrologist will help lead your team in creating your personalized health plan.
Urologist
Your urologist knows all about the urinary system, which includes your kidneys. A urologist could even serve as your primary doctor if you have regular problems with kidney stones and they are also trained surgeons to remove kidney stones.
Registered dietician (RD)
An expert in identifying and treating disease-related malnutrition and in conducting medical nutrition therapy.
Dialysis Nurse
Specialize in helping patients who must undergo dialysis treatment, a process that removes toxins normally excreted by the kidneys. They help educate about self-care choices that allows you to live as full a life as possible.
Social Worker
Help the patient and their family understand and cope with a variety of issues associated with a Hyperoxaluria and the various side-effects of a transplant if needed.
Financial Counselor
These individuals evaluate your insurance benefits and assist with any billing and financial questions you may have.
Transplant Team
A transplant team can include a nephrologist who specializes in kidney transplant, a hepatologist who specializes in liver transplant, and additional physicians who provide medical support during follow-up.
The Oxalosis and Hyperoxaluria Foundation (OHF)
Besides being the largest private funder of research in the world to find a cure for Hyperoxaluria, the OHF has wide variety of programs and services for patients and professionals that work to educate, inform and empower our community.
Hyperhydration (drinking lots of water) is important to help flush out the buildup of oxalate that can cause kidney stones. Your care team will help figure out how much water you need based on age and weight.
Support should play a key role in your Hyperoxaluria care plan
Patients who have a good support system tend to have better outcomes. Many patients and caregivers have said, seeking out others who are living with hyperoxaluria can be both helpful and therapeutic. By joining the OHF community, you can connect with other families dealing with the same issues you are facing.
Helpful Hints
It is not unusual to worry about the future and what’s to come.
Insurance
Today’s insurance landscape can be hard to navigate. Do your homework, find, evaluate, and compare health insurance options, identify programs to help pay for costs, check out OHF resources for patient assistance programs.
Transitioning from Pediatric to Adult
Transitioning from adolescence to adulthood is a time in life when there are a lot of changes happening all of a sudden from finishing high school to making new friends to going away to college. Having grown up with hyperoxaluria, teens and young adults in the hyperoxaluria community may actually know more about their health and how to manage their disease because they have had to before.
Treatments & Therapies
The Oxalosis & Hyperoxaluria Foundation facilitates the development of promising new drugs, and the drug development pipeline enables you to track the progress of these potential therapies. Nearly every hyperoxaluria drug being investigated was made possible because of the OHF’s support and its ongoing work with researchers.
