hi i also have SOD with an undeactive throid and pituatary gland. I was born blind but i regained vision when i was 3 and am now registered partially sighted. I was on growth hormone from age 7 to 17 and thyroxine and hydrocortisone from age 8 til.. well basically for life. If you have any info on specialists in the uk please could u pass them on and if u have any questions also please get in touch. Thank u
I also have Septo-Optic Dysplasia! In 2004 I had Transverse Myelitis too. It's another one of those rare things. I had no idea there was a day just for rare diseases/conditions. I think it's kind of cool and I'm kind of disappointed I missed it.
2 years ago. Where are you living ? I would be great if we could correspond by e-mail. I'm so interrested. You can contact me and found my e-mail on the website fondationlou (via google).
hi i also have SOD with an undeactive throid and pituatary gland. I was born blind but i regained vision when i was 3 and am now registered partially sighted. I was on growth hormone from age 7 to 17 and thyroxine and hydrocortisone from age 8 til.. well basically for life. If you have any info on specialists in the uk please could u pass them on and if u have any questions also please get in touch. Thank u
MakeUpYourMindGirl1 2 years ago
I also have Septo-Optic Dysplasia! In 2004 I had Transverse Myelitis too. It's another one of those rare things. I had no idea there was a day just for rare diseases/conditions. I think it's kind of cool and I'm kind of disappointed I missed it.
WildKatMagazine 2 years ago
Comment removed
smistydk 3 years ago
Lisa!! You look wonderful!! How amazed was I when I saw your lovely face promoting this great day!! Best of luck to you!!
richfranklinrawks 3 years ago
Thanks a lot for this video.
Luc,
Lou's daddy (ONH syndrome too)
Look to our video and tyou will discover another aspect of septo optique hypoplasia.
Regards.
lucboland 3 years ago
I saw lous story on a L'Arche magazine! I was so excited to see it there, but that was quite some time ago!
ghdcanada 3 years ago
Hi,
2 years ago. Where are you living ? I would be great if we could correspond by e-mail. I'm so interrested. You can contact me and found my e-mail on the website fondationlou (via google).
regards
Luc
lucboland 3 years ago