I always check oxalosis and hyperoxaluria foundation information
I receive very useful information from this foundation. Many people thanks including me for their devotion.
We The OHF are "The Lil Engine that Will" indeed find a cure for this rare orphan disease. of Primary Hyperoxaluria. I thank you Kristy for sharing your story...about your children, as my own child Natalie has this same disease. We would be nowhere without the OHF! Godspeed to a cure...with HOPE!
Oxalosis and Hyperoxaluria Foundation has been a critical piece to our support team. Two of our children were diagnosed with Primary Hyperoxaluria Type 1 (PH1). Our youngest son (Matthew) went into end stage renal failure at 5 months old and needed daily dialysis until he received a liver and kidney transplant when he was 2 1/2 years old. Our oldest child (Molly ) is "stable" and living with this disease. It is very frustrating to have two children with a disease that is very rare and most doctors having little or no knowledge about the condition or its treatment. We are very fortunate to have knowledgeable specialists who treat them now, but it wasnt always that way. We relied heavily on OHF for information that would help educate the local physicians on treatment for our children until we could get to our specialists. OHF provided us with answers and with a sense of community. They let us know we were not alone and helped put us in touch with other families on similar journeys. Sharing accurate information is critical to getting the best treatment options for each patient. OHF helped us with that. Our children presented with their disease very differently from each other. OHF has helped us understand the differences in our children's disease and answers to questions about what is being done to research it. They help families deal with the entire process and give us hope for a better future. The hard work and dedication of OHF will lead to a treatment and cure for PH patients. The research they are doing gives us hope that our daughter might be able to find a treatment before her condition worsens. That hope is everything.
Two of my children have PH1. When my youngest child, Matthew, went into kidney failure at 5 months old, ohf became our lifeline for getting information about this disease to family and friends. It was this organization that educated us on the disease. As our son received dialysis and was placed on the transplant waiting list, we feared our daughter who also had the disease would soon follow. Getting information from ohf and talking to other families helped us deal with our fears. She is still stable with functioning kidneys and Matthew received his liver kidney transplant last year. We were for theatre enough to get media to cover out story and have a mini documentary done while we were still awaiting transplant. Ohf uses that documentary on Matthew to show others what they might expect with a child suffering from PH. Having a rare disease is challenging, especially when most doctors have never heard of it and misdiagnose it. Having ohf.org is critical for a family to refer back to for accurate information and to know they are not alone.
Our son, Jackson was recently diagnosed with PH1. My husband and I immediately began looking for resources when we came across OHF. OHF has given us hope during a dark and uncertain time in our lives. We feel like we are receiving the best treatment for him between Mayo and OHF and have quickly became very educated on PH1. We are very excited to attend our first patient education day to network with others and continue to learn even more about our newly beginning journey.
Our daughter was diagnosed with PH2 almost 10 years ago and OHF has been a huge support for us. They are such caring and compassionate people.
We love their patient meeting days when we get to learn more about this disease and meet other families.
Both of our children were diagnosed with PH1 in 2008. Our daughter has been through more than 15 hours of surgeries and lost half her kidney function due to this disease. Thanks to the OHF, our family has found excellent health care, ongoing education and incredible support over the past eight years. I can't imagine how much more difficult this journey would have been without the OHF. We are so fortunate to have such an outstanding nonprofit working to cure this disease and help all those it impacts.
OHF has been a constant source of support, information and reassurance over the last 8 years. When the doctor first suspected that our 19-year-old daughter had Primary Hyperoxaluria, we immediately Googled the term and found the OHF. Between OHF and the Mayo Clinic, we feel we have an incredible network of caring professionals who have connected us with other patients and families and with the international research community working to find a cure. We feel so fortunate that such a rare disease has such a strong foundation dedicated to education, advocacy and support for patients and their families.
In 2008 our lives changed and OHF became part of our family. They corresponded and worked hand and hand with the medical team treating my husband at the time. They were there every step of the way from the biopsy that had to be handled with great care to get from Texas to the lab to be tested many miles away to the double transplant of a liver and kidney. Sadly my husband lost his battle with PH in 2009. But my son and I are so appreciative and blessed for all the support and helpful information we received and still receive today from OHF. Our hearts overflow knowing that everyone at OHF is deligently working in memory of my husband and my son's father and for everyone else affected by this to one day find the cure.
The OHF has given our family a sense of community and strength in challenging times. In 2010, when Kate was diagnosed, my husband and I attended the patient day in NYC. That day provided information, support, and more importantly, a feeling that although we may stumble along the way but that we are not alone in this journey. About a year later, Addie was diagnosed too. I never forgot that day in NYC. I walked up to the check-in at the conference and when I said my name, others at the desk knew my children by name and it was a little surreal. By providing opportunities for education, networking and support, my family has grown in knowledge. We are very grateful to the Oxalosis and Hyperoxaluria Foundation for its assistance and may we all be more resilient as a result.
OHF has been an amazing support for my two sons whom were diagnosed with PH2. They were able to assist with information and they shared our story to help others through their own journey with this rare disorder. I'm thankful to have them available.
My sister was on dialysis at 2 years old in 1984 and passed away 9 years later due to PH1. At 21 years old in 2001 my kidneys failed due to it and at first I refused dialysis because I didn't want to suffer like my sister did. A friend went online and found information from OHFs site that there was a treatment option of a combined kidney and liver transplant. I received my transplants in 2004 and continue to look forward to a long, healthy, and happy life. I'm grateful OHF was there and has continued to be there to provide valuable information and a sense of community for such a rare disease.