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Which advice would you give to someone who has just been diagnosed with Osteopetrosis?
See some advice from people with experience in Osteopetrosis to people who have just been diagnosed with Osteopetrosis
Try to find treatment of meds soon before symptoms apear. Evaluate if theres chance for bone marrow transplant.
Posted May 17, 2017 by María Ximena 1071
I was born with it so it was natural for me to accept i have this disease. Over time I knew I had to limit myself. I would tell people that it is not the end of the world. Your mind is still sharp so use it. The body doesn't control my mind, but otherwise my mind controls my body.
Posted Jul 26, 2017 by Chuck 2001
I would first say...to breathe. It can be very overwhelming to receive a new diagnosis...and with a 'rare' diagnosis...it can seem mind-numbing. Join the Osteopetrosis group on Facebook (https://www.facebook.com/groups/osteopetrosis/) for those suffering from any form of this disease. We share our stories, we answer questions, we do all we can to try to help your through your journey with Osteopetrosis. There are almost 400 members..which is amazing due to how rare this disease is...and it's a wealth of information for us as patients.
Posted Sep 9, 2017 by lorirdavis 1452
Read everything you can find on it, find a doctor who treats it and listen to them
Posted Sep 28, 2017 by Mary 2550
Translated from portuguese
Improve translation
I would like to know much more about what was going to happen with the time
Posted Sep 15, 2017 by Paula 2500
