My fervent hope is that everyone afflicted with PH1 around the world will one day have access to life changing drugs, as my dear friends have been fortunate enough to receive.
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My fervent hope is that everyone afflicted with PH1 around the world will one day have access to life changing drugs, as my dear friends have been fortunate enough to receive.
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We are a family suffering from ph1 .. my son died of this disease .. and my wife is currently suffering from kidney failure. And my 8-year-old daughter is suffering from this disease, but her condition is currently stable because of the treatments she takes and a lot of fluids
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I would like to especially aware parents of developing countries that don’t ignore persistent nausea and vomiting of your infants, toddler and young kids. I feel parents are the main life saver to early identify symptoms and report to doctor. And being a parent, ask doctor for investigation. As in my case my daughter’s symptoms were totally ignore by health team since her birth, no investigation done and once her severity increases she ended up into a formation of unusual calcium oxalate stone. Wishing you a healthy lifestyle to all hyperoaxluria.
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In addition to access to care, I wish for additional access to education!
Publications, research and data on Primary Hyperoxaluria (PH) is so limited and I hope one day information about PH, specifically Type 3, is more accessible. Trying to educate our family and friends on our daughter’s PH3 diagnosis has been difficult as our own knowledge is so limited and we have little supporting resources to share.
I am so thankful for the education the Oxalosis and Hyperoxaluria Foundation provides to this community!
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I’m inspired everyday by this community to keep working towards a world without Hyperoxaluria! Everyone join #Hyperoxaluria Week 2022! Together we can make a difference!!!
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My hope is that all patients will have access to life saving treatments around the world.
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