My Hero
May 31, 2016
By: catgriego
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My daughter was 33 with 3 small children when she was diagnosised with GPS. She spent months in the hospital and has been in and out more times than I can count the past 5 years. I think the hardest thing about being a parent of a GPS patient is the lack of information. My daughter does her dialysis at home at night now which helps her be able to take care of her children. She is in the hospital tonight getting blood. Over the past year she has lost about 80 pounds and they can't seem to find out why. Where do we go for information? Are there any new studies out there? How can we raise awareness for such a "rare" disease. And we still have no idea what caused it. If anyone out there has any answers please point me in the right direction. I will pray for those of you with the disease and for your families.
1 comment
Hello Sir, I am from India , my younger sister a 28 year old girl woman , was diagnosed with the syndrome 5 months back. No body knows the cause of the disease as some day it is because of genetic or environmental factors or drug induced. We too have been devastated by the problem and are going through immense pain. I am also planning to start a blog or something to raise awareness about this rare disease. If you have any ideas on it , please share. I wish health to your daughter and her children.
Commented 3 years ago swati 10
