The Wall Street Journal
The Wall Street Journal article about ARPKD/CHF was outstanding, bringing into focus the hardships of a prenatal diagnosis and unconditional love of a mother (thank you Jennifer for sharing your story). Thank you also Gautam Naik at gautam.naik@wsi.com for taking on this subject!
Message that followed…
Thanks for covering the story. Like the Carden’s I live in Michigan and my daughter, who was diagnosed with ARPKD at 4 months, is now almost 6 and is doing very well. Her symptoms were not typical and it now appears she may have a rarer if not singular form of kidney disease.
A few days after her birth, we were told she wouldn’t survive. The doctors reversed their prognosis the next day. We feel very fortunate that she has been ahead in every measurable developmental milestone. So far, no one would know she’s sick. She is very bright, active and sweet as can be.
I learned of the ARPKD/CHF Alliance shortly after my daughter’s diagnosis and it’s a shame to see the number of people that suffer immeasurable worry after speaking to their doctors only to then face a relatively normal life with their affected children. There is tremendous variability from one patient to the next and many doctors only forecast the worst case scenario. Our diagnosis was given to us over the phone by an intern that wasn’t able to answer any of our questions. We had to wait for several days to speak to a nephrologist who knew more. We have found other parents, the ARPKD/CHF Alliance and the NIH to have been our greatest sources of information.
Thanks again for covering this story. Much work needs to be done to help families understand and cope with rare kidney and liver disorders. Your article can only help raise awareness for this cause.
Sincerely,
Carol A. Seidl
www.seidlweb.com
