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I had a long rant written up the first time I saw this article and deleted it. Came back to it and saw this and it made me want to reply. Not to say anything gr
by heyoni 3y ago
I had a long rant written up the first time I saw this article and deleted it. Came back to it and saw this and it made me want to reply. Not to say anything groundbreaking either except that I'm going through something similar now with my daughter. She has a rare genetic disorder and funny enough, we're also heading to CHOP soon (we're in touch with Elaine Zackai) to get some guidance.
I didn't realize everyone with these types of syndromes were being funneled to the same place. Hope you guys are doing alright. We might even bump into each other.
- jwineinger 3y agoLevine told us that he and 3-4 other docs in the US get most of the referrals for 2nd opinions for PHP/PPHP. Our local endocrinologist had seen 2 or 3 cases in her career, and he said he sees that many per week. I hope you get some good news/answers there. CHOP was just another level compared to what we're used to in a city that has pretty good healthcare. I'm happy to connect if you're interested.
- heyoni 3y agoI'm very interested in hearing about how the process went for you. I added my email address to my HN profile, let me know when you get it so I can proceed to remove it. I'm not sure that good news will come out of my meeting with CHOP doctors but I'm going anyway.